In Pursuit of ABX - May I have coffee with my milkshake?

A forum for the discussion of antibiotics as a potential therapy for MS

Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby jimmylegs » Wed Dec 28, 2016 8:02 am

napay i completely missed your post earlier in dec. long time no see! :)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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MSC Stem Cell Therapy articles

Postby notasperfectasyou » Mon Jan 02, 2017 9:06 am

Hi Jimmylegs, it has been a while. Posting for me is about sharing and I don't generally post unless I have something to share. I'm now deep into researching stem cells for Kim. It makes no sense to do all this reading without sharing what I find. It is not a simple topic. Here are some good articles I have read recently on that relate to Mesenchymal Stem Cell therapy:

Xie, Chong et al. 2016 Induced Stem Cells as a Novel Multiple Sclerosis Therapy. There is a full text link on this website.

Cohen, Jeffrey 2013 Mesenchymal stem cell transplantation in multiple sclerosis. There is a full text link on this website.

Minteer, Danielle et al. 2015 Adipose stem cells: biology, safety, regulation, and regenerative potential. Click here for full text

Bai, Lianhua et al. 2012 Hepatocyte growth factor mediates mesenchymal stem cell–induced recovery in multiple sclerosis models. There is a full text link on this website.

Lindsay, Susan et al. 2016 Are nestin-positive mesenchymal stromal cells a better source of cells for CNS repair?. Click here for full text

Jadasz, Janusz et al. 2016 Recent achievements in stem cell-mediated myelin repair. Click here for full text

I also have a stack on Hematopoietic Stem Cell therapy, which I will post later. As for now, we are looking to have the MSC therapy done at Celltex. Ken
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
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HSCT Stem Cell Therapy articles

Postby notasperfectasyou » Thu Feb 02, 2017 4:03 pm

I have a bunch of articles about Hematopoietic Stem Cell Transplantation (HSCT). I'll keep adding them to this post. Most of the articles revolve around SPMS since that is what Kim has.

Burt, Richard et al. 2012 Autologous hematopoietic stem cell transplantation for multiple sclerosis – if confused or hesitant, remember: ‘Treat with standard immune suppressive drugs and if no inflammation, no response’. There is a link to a free full text PDF on this website.
- This is an editorial and it is a few years old, however, there is a lot of good information here that is responsive to questions I've been left with after reading many of the other articles I've referenced below. Therefore, this article goes on the top of the list.
- Explains that there are varying way to adjust the toxicity of HSCT conditioning (chemo). An extreme regimen is described as one that includes high-dose Busulfan or Total Body Irradiation (TBI). BEAM and ATG is said to be a safer intermediate intensity regimen. it is implied that Cyclophosphamide and ATG/Rituximab is safer, having not being attributed to any morbidity. I have listed links for these agents below.
- Suggests that HSCT mostly benefits younger patients who have had MS for a shorter period of time. Also, adds that patients with higher EDSS scores and no active inflammation are not likely to get a good response from HSCT.

List of Agents that may be used in HSCT conditioning regimen

Anti-thymocyte globulin (ATG)
Alemtuzumab (Campath, Lemtrada)
Rituximab (Rituxan)
Busulfan (Busulfex, Myleran)
Cyclophosphamide (Cytoxan, Neosar)
Carmustine (BiCNU, Gliadel)
Melphalan (Alkeran, Evomela)
Fludarabine (Fludara)
Etoposide (VePesid)
Cytosine Arabinoside (Ara-c, Fludara)

Some articles will discuss a combination of drugs abbreviated as BEAM, which is: Carmustine (BiCNU), Etoposide, Cytosine Arabinoside, and Melphalan.

Bakhuraysah, Maha et al. 2016 Hematopoietic stem cell transplantation for multiple sclerosis: is it a clinical reality?. There is a link to a free full text PDF on this website.
- This is a review article. Good article that explains what HSCT is.
- Summarizes a number of studies to show benefits.
- References Shevchenko et al. (2015), abstract here. 98 of 99 patients had neurological improvement or stabilization 6 months after HSCT.

Walker, Lisa et al. 2016 Longitudinal change in Paced Auditory Serial Addition Test (PASAT) performance following immunoablative therapy and haematopoietic stem cell transplant in multiple sclerosis. Here is a separate link to a free full text PDF of this article.
- 3 year study that showed HSCT improved or stabalized disability in RRMS and SPMS
- Improved cognition
- Patients were treated with cyclophosphamide, busulfan and ATG

Meamar, Rokhsareh et al. 2016 The role of stem cell therapy in multiple sclerosis: An overview of the current status of the clinical studies. Here is a separate link to a free full text PDF of this article.
- This report compares MSCT with HSCT

Mancardi, Giovanni et al. 2015 Autologous hematopoietic stem cell transplantation in multiple sclerosis: a phase II trial. Here is a separate link to a free full text PDF of this article.
- This is a comparative study between HSCT and Mitoxantrone (Novantrone)
- Study included SPMS patients with documented worsening in the past year.
- Patients were treated with intermediate intensity conditioning regimen, BEAM/ATG
- HSCT significantly reduced the number of MRI lesions counted over the 4 year study when compared to Mitoxantrone
- No difference in EDSS change at years 1, 2, 3, and 4 was found between the two treatment arms
- References Burman et al. 2014, Autologous haematopoietic stem cell transplantation for aggressive multiple sclerosis: the Swedish experience. Here is a separate link to a free full text PDF of this article. This article concludes that HSCT is a very effective treatment of inflammatory active MS.

Pandit, Awadh et al. 2015 Autologous hematopoietic stem cell transplantation in progressive severe multiple sclerosis. There is a link to a free full text PDF on this website.
- This article presents a case summary of one patient diagnosed with severe SPMS
- EDSS was reduced from 6.5 to 5.0
- Patient was treated with cyclophosphamide, ATG, and methylprednisolone

Mancardi, Giovanni et al. 2012 Autologous haematopoietic stem cell transplantation with an intermediate intensity conditioning regimen in multiple sclerosis: the Italian multi-centre experience. There is a link to a free full text PDF on this website.
- 55% of the patients in this study were SPMS.
- There was a long-term follow up (7-10 years) with 18 patients, which showed stability in EDSS scores in 8 patients.
- Patients were treated with intermediate intensity conditioning regimen, BEAM/ATG

Saccardi, Riccardo et al. 2012 A prospective, randomized, controlled trial of autologous haematopoietic stem cell transplantation for aggressive multiple sclerosis: a position paper. There is a link to a free full text PDF on this website.
- HSCT is a higher risk therapy.
- Decreasing mortality since 2001 is likely due to avoidance of High-Dose Busulfan and Anti-T-Lymphocyte globulin (ATG).

Atkins, Harold et al. 2012 Hematopoietic Stem Cell Therapy for Multiple Sclerosis: Top 10 Lessons Learned. There is a link to a free full text PDF on this website.
- This is a review article. HSCT can be tailored to toxicity risks.
- Neuropathology rather than disability seems to be determinative of HSCT outcomes.
- Can stabilize disability, cease progression of SPMS.
- References Bowen et al. (2012), Autologous hematopoietic cell transplantation following high-dose immunosuppressive therapy for advanced multiple sclerosis: long-term results. Patients with advanced MS remained stable as long as 7 years after transplant. Patients were treated with TBI, Cyclophosphamide and ATG.

Fassas, Athanasios et al. 2011 Long-term results of stem cell transplantation for MS: a single-center experience]. Here is a separate link to a free full text PDF of this article.
- 19 of 35 patients were SPMS
- 9 years post-transplantation, 80% of patients were progression-free
- Baseline EDSS scores ranged from 4.5 to 8.0
- A conditioning regimen of BEAM and ATG was used

Farge, Dominique et al. 2010 Autologous hematopoietic stem cell transplantation for autoimmune diseases: an observational study on 12 years’ experience from the European Group for Blood and Marrow Transplantation Working Party on Autoimmune Diseases. There is a link to a free full text PDF on this website.
- Peripheral blood (v/s bone marrow) as a source of stem cells appeared to improve overall survival.
- Extremely low number and decreasing number of deaths in recent years.
- Various conditioning regimens were used.
- References Burt et al. (2009), Autologous non-myeloablative haemopoietic stem cell transplantation in relapsing-remitting multiple sclerosis: a phase I/II study. This is an RRMS study. A conditioning regimen of Cyclophosphamide, Alemtuzumab/ATG was used.

Guimaraes, Fabio et al. 2010 Impact of autologous hematopoetic stem cell transplantation on the quality of life of patients with multiple sclerosis. There is a link to a free full text PDF on this website.
- 79% of patients showed stabilization or neurological improvement 1 year post transplantation
- Patients showed an improved quality of life
- Most of the patients in the study were SPMS

Saccardi, Riccardo et al. 2005 Autologous HSCT for severe progressive multiple sclerosis in a multicenter trial: impact on disease activity and quality of life. There is a link to a free full text PDF on this website.
- One of the few studies that focuses on improved quality of life
- 74% of patients were progression-free for 3 years - HSCT induced a prolonged clinical stabilization
- Most patients in the study were SPMS with EDSS scores between 5.0 and 6.5
- A conditioning regimen of BEAM and ATG was used


FINDING A CLINIC

Here are some links that have helped me identify hospitals where HSCT is being done for MS. HSCT Hospitals. And this one More HSCT Hospitals. I have emailed a number of these and this is what I have found:

3 Clinics will accept Kim as a patient:
Clinica Ruiz says they are accepting some SPMS and PPMS with EDSS of 7 or less. Noted conditioning regimen: Cyclophosphamide and Rituximab.
Clinica Ruiz Clinical Trial - Outpatient Hematopoietic Grafting in Multiple Sclerosis Employing Autologous Peripheral Blood Stem Cells
Publication: Ruiz-Arguelles, Guillermo et al. 2016 A Feasibility Study of the Full Outpatient Conduction of Hematopoietic Transplants in Persons with Multiple Sclerosis Employing Autologous Non-Cryopreserved Peripheral Blood Stem Cells
Publication: Ruiz-Arguelles, Guillermo et al. 2015 Outpatient Hematopoietic Grafting in Patients with Multiple Sclerosis Employing Autologous Non-Cryopreserved Peripheral Blood Stem Cells: A Feasibility Study

A.A. Maximov Department of Hematology and Cellular Therapy accepts patients with EDSS of 6.5 or less. Noted conditioning regimen: Cyclophosphamide and Rituximab.
This clinic is not conducting any clinical trials.
Publication: Shevchenko, Jury et al. 2015 Abstract - Long-term outcomes of autologous hematopoietic stem cell transplantation with reduced-intensity conditioning in multiple sclerosis: physician's and patient's perspectives
The linked abstract they sent me is actually unrelated to the therapy they currently perform and the doctor who oversees it. Review all information you are provided carefully.

Sharei Tzedek Hospital in Israel sent me a bunch of forms to fill out, did not have any stated criteria. Noted conditioning regimen: BEAM-ATG.
This clinic is not conducting any clinical trials.
This clinic has not published any results for HSCT for MS.

Clinics that did not accept Kim as a patient:
Northwestern University says they are only accepting RRMS patients. Noted conditioning regimen: Cyclophosphamide and Alemtuzumab (or thymoglobulin). Also, see Dr. Burt above.
Karolinska University Hospital says they are only accepting RRMS patients. Noted that they say that they use the same protocol as Dr. Burt.
Seattle Cancer Care Alliance|Fred Hutchinson Cancer Research Center only accepting RRMS patients.
Careggi University Hospital says they accept patients with EDSS of 6.0 or less. Conditioning not noted, but see Dr. Saccardi above.
Copenhagen University Hospital does not provide HSCT to patients from abroad.
Universitätsklinikum Heidelberg sent me a bunch of forms to fill out. They are only accepting patients with RRMS to participate in a study.
Colorado Blood Cancer Institute sent me a pre-screening form to fill out. They are only accepting patients with RRMS to participate in a study.
The Ottawa General Hospital cannot treat people without valid Canadian health coverage.
Raffles Cancer Center in Singapore will only accept RRMS or SPMS patients who have recently transitioned from RRMS to SPMS, within the last year or two.


IMPORTANT NOTE: The notes above regarding clinics and hospitals relate to my particular search at this time. Your specific MS condition, symptoms and history may yield a different result. Also, the country you live in and the rules at the clinic at the time of the request may impact the acceptance decision.

My Other Researched Posts
Understanding MS 101: Doctor Talk and People Talk
Understanding MS 102: My Doctor is Expressing Cytokines
Combined Antibiotic Protocol for MS: Q&A and Peer Reviewed Support
In Pursuit of ABX - May I have coffee with my milkshake?
Last edited by notasperfectasyou on Thu Apr 06, 2017 10:04 am, edited 42 times in total.
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby Loriyas » Wed Feb 08, 2017 6:41 am

Hi Ken
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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby notasperfectasyou » Wed Feb 08, 2017 9:12 am

Loriyas wrote:Hi Ken


Hi Lori, How have you been. I took a quick look at your log, but didn't look updated. We just saw the doc in November (timed the appt with the Keith Urban concert :-D ). He had little that was new and Kim's been sliding. He suggested we might look at stem cells, has one other patient who has done it, got us in touch with her. So now Kim has a gofundme page because stem cells are not covered by insurance. Since I'm actively trying to discern my way through this stem cell stuff, I thought I should comeback here and share. Ken
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby notasperfectasyou » Wed Apr 26, 2017 8:19 pm

I'm going to start a new post in this thread because ........ KIM HAS GOTTEN INTO CLINICA RUIZ IN MEXICO!!!!!
I'll have a lot to say as we go thought this, but I want to respond to the question about why I'm posting here and not in the Stem Cell forum - I think this Stem Cell and Chemotherapy procedure is a natural extension of CAP. We know that Kim thrived in her first 2-years on CAP and that she only lost all the accrued benefit she had received (If you don't understand this, you have to go back and read this thread from the beginning) after developing resistance. So we know that there is something that was being controlled by CAP and it figured out a way around CAP after 2 years. We also know that Stem Cell transplantation and Chemotherapy are helping people with MS reverse their disability, in many cases more dramatically than what Kim experienced her first year on CAP. So, it could be that Kim is a better than average candidate for this procedure because the her MS has been reversed by ABX.

So I'll also be using this post as a way to keeping our "to do" list up to date.

We need to figure out air
Ruiz provides a condo for us to stay at
I need to think about all the scripts and supplements we take and what I need to do to get through customs with them
I need to figure out how our phones will work and if there is internet
I think we need to think about making dr. appointments here in advance for the return
I need to figure out how Kim will get the follow up Rituximab treatments
I've heard we should stay in Mexico an extra week so Kim can recover before flying, not to have fun.
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
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Clinica Ruiz in Monterrey Mexico

Postby notasperfectasyou » Sun Jul 16, 2017 9:08 pm

From the moment we arrived at the airport, the Clinica Ruiz staff has been attending to our needs and making sure we are cared for. Ulices picked us up at the airport, late Saturday night. We were hours late due to weather. Our home away from home is a very nice two bedroom/bath apartment that the clinic provides. There is good WiFi, a full kitchen and washer/dryer. The clinic left us a welcoming treat basket, most of which we devoured immediately upon arrival. The Apartment also comes with full telephone and cleaning service. Looking out the window from the 14th floor, we get a really amazing view of the mountains that surround Monterrey.

CHRONOLOGY

On Sunday morning, Mario and Marcela came by to go over the first two weeks of medical treatment, especially what was needed to prepare for Medical Exams Monday morning. We were provided with a schedule of doctors and tests, which was impressive. They also helped us get the TV’s working, which would have been easier if we could read Spanish. In the afternoon, Miguel took a group of us to a H.E.B. Store, which is a lot like a Walmart. We met two other patients, Dean from Scotland and Caroline from Canada. Miguel helped us find things in the market and then took us back to the apartment. Ken also ventured out and has walked to a Starbucks, OXXO Convenience Store, Sears and brought us take-out dinner from a Chili’s. There is quite a lot within a 10 minute walk, including a shopping mall where Ken me a shower cap. A lot of folks don’t speak English, but are eager to help. We have found most all folks to be very friendly. You can find most anything in a store by showing an employee a picture on your iPhone. Our iPhones work just fine, especially because we set up a plan with our carrier that includes Mexico ahead of time.

Important note, there does not appear to be any family restrooms in Mexico, which is good to think about before you go running off on a 2-3 hour shopping trip. Besides that, we have had a great first day getting settled in.

Monday, Day-1: We met with about a dozen doctors for a dozen different tests. It’s all part of the screening. Kim was told she has been anemic for several years, which may increase some risks of the procedure. There was a lot of waiting, it was very wearing on everyone. Tomorrow it all gets very serious, chemotherapy starts. We received a lot of boxed prescriptions, emergency scripts and instructions for them over the coming weeks. Tomorrow Kim needs to take 125mg of Emend for nausea one hour before her first day of Cyclophosphamide and Mesna chemotherapy. We have been given a phone, to be in constant contact with the doctors and staff. Everyone is expected to lose their hair, so the patients are thinking about having a shaving party. She’s also going to have a lot of restrictions on what she can eat, where she can go and what she can touch. They are stressing hand sanitizer. Tonight was the last day she can eat normal food, so I got Kim authentic Mexican food for dinner, which was really good (El Gran Pastor). Final good thing, we found CNN and about 5 other cable channels in English. Good thing I brought the first 8 seasons of Seinfeld on DVD.

Tuesday, Day-2: Kim was very upbeat, anticipating her first chemo treatment today. As we rode over to the facility with Dean and Gail, we all talked about what a difficult road it has been getting here - to our first day of Chemotherapy and Stem Cell Transplantation. It is hard to believe this is really happening today. We were in group 2. Group 1 left the apartments around 9 am. We met up with them for a group picture as they were leaving the treatment center. Getting started was not pleasant. It took 4 tried to get the IV set, she hates it when they put it in her hand. She also got overheated and it seemed as if she was going to pass-out. Kim will need to have an ultrasound done tomorrow as a pre-caution, which speaks to the level of care Kim is receiving. Forgot to mention, they also gave us a smartphone that we have used several times to reach-out to the medical and support staff. We have called Dr. Elias several times and he’s right there for us when we have a question or need. Kim’s chemo ran longer because we were delayed getting started, so the staff brought us panini sandwiches and drinks from Starbucks. While we were at the medical center, they completely cleaned our apartment and installed additional handicap bars in the bathroom for Kim to hold onto. Of course, we are here for the medical treatment and it’s pretty intense. We got back to the apartment a few hours ago and Kim just fell asleep on the sofa. After she woke up, I fed her a bag of trail mix one piece at a time. She feels very foggy, so I have had to watch her to make sure she doesn’t fall and get hurt. Kim will have a second round of chemotherapy tomorrow. Before that, there is a series of scripts I need to give her.

Important note for the day, it might have been overkill bringing Kim’s 4-wheel handicap scooter. Offices and rooms are a little tight at times, so her compact 3-wheel scooter might have been a better choice. Ultimately, they provided Kim with a new wheelchair to use the entire time we are here.

Wednesday, Day-3: Kim’s moving a little more gingerly today. We had the ultrasound today, which didn’t identify any problems. Chemo day 2 was much like day 1. The coming big deal is the impact on Kim’s diet. She is not to eat any seafood, period. Also, no raw foods unless they have a solid hard skin that has been fully sterilized with a vegetable wash that I bought at the grocery store. So, I soaked some avocados and kiwi’s for Kim. The diet is all about protecting Kim’s very compromised immune system for the next 6-months. If Kim or I get any kind of sick the next few days, it apparently impacts the ability to proceed through the sequence of the therapy. When we got back to the apartment, everything had been cleaned by clinic staff. They will be cleaning regularly to keep conditions as sterile as possible. We have also received a schedule for all the scripts Kim is to take over the next two weeks, there are a lot of pills in these boxes they gave us. Overall, Kim did well today. She felt nauseous a few times and she ate then fell asleep as soon as we got back to the apartment. She’s really brave and resilient. We are starting to get comfortable with the clinic staff. Some of them are beginning to get my sense of humor.

Cute little story today – on my way to Starbucks, I have to cross a foot bridge that goes over a major city road. I can see down the road a pretty long distance, both ways. I saw a police car chasing a small white car with a completely lit up light bar. Only strange thing is they are both going about 30 miles per hour, stopping then starting back up a lights, but there’s no traffic stop happening. It looks like a very leisurely slow motion car chase. It turns out; all Monterrey police drive with their full light bars on all the time. It looks very strange the first time you see this.

Thursday, Day-4: Kim was super nauseous in the morning. Dr. Cruz came by the apartment to give Kim a Filgrastim injection. This is to help mobilize her stem cells to get her ready for the stem cell collection. This process is going to be twice a day for a week. At least the Filgrastim is a sub-Q injection and not an IM. After the injection, a group of us were taken over to the clinic offices to meet with Dr. Gomez. He checked Kim and said she was doing very well. Kim took some Tylex when we got back then took a nap. In the afternoon, she was feeling better. The clinic expects most folks to be feeling better tomorrow, so they are planning a trip to Walmart for everyone. Walmart may not sound so exciting, but given the options for stocking our apartment, Walmart would be a dream. One of the caregivers, Jacqueline and I have been lobbying for this. Here’s an example of why, today I cooked a chicken and rice dinner for Kim using two butter knives, because there isn’t a spatula in the apartment. I can’t wait to get to a Walmart and buy a spatula. The apartment is exceptional, it just doesn’t have a spatula. On the more serious side, the MS warriors are positive, spirited and confident. Nobody spends their own money to assume the risks of putting their body through this without a deep sense of commitment.

Friday, Day-5: We started the morning with Kim’s twice a day shot. As I was watching Dr. Cruz filling the syringe, I could see that this is not a small shot. It took nearly a minute to complete the injection. Kim was very tired all day. Miguel and Ulices came by in the afternoon with the clinic vans to take us to Walmart. If we had a do-over, I’d say maybe we should have waited one more recovery day from the chemo. Despite being excited about going to Walmart, everyone was somewhat subdued with a general feeling of tiredness. Kim rested on her scooter in the middle of the store while I ran off to find things and bring them back to for a yea or nay. The store staff was super helpful, dare I say more helpful that folks at my local Walmart. Everyone I asked for help stopped what they were doing and gave me their full attention and tried as best as possible to help me. No one made me feel like I was an inconvenience, rather they walked with me as if they were part of the scavenger hunt. Since we had the van, I bought heavy stuff, like 5-liter bottles of water. After we got back, Kim fell asleep while I cooked ground beef and rice. She still doesn’t have much of an appetite. At 8 pm she was allowed to take anti-nausea medication just before her second injection of the day. The doctors say all this is normal, which is comforting to know.

Kudos to the Ruiz Clinic management, they replaced our TV with a smart TV today. We would have made it with the 5-6 english channels we had, but the smart TV should help. I just need to figure out how it works.

Saturday, Day-6: I forgot to mention the amount of planning and worry that related to packing Kim’s vitamins and supplements. She’s been on a significant regimen for several years and I was pretty worried about having all the pills confiscated at the airport. While we didn’t have any problems with Mexican customs, on Monday Dr. Elias asked Kim to stop taking all vitamins, supplements and antibiotics during the treatment due to her anemia. Now I wonder about bringing them back to the US.

Today is another double Filgrastim shot day. The shot went well this morning, Kim felt less sting. She was feeling a bit better, hungry, thirsty and vocal about it. Post-injection she said she was feeling like a post-surgery zombie. Tiredness and weakness are normal side effects of these injections. There are 3 other patients in this building, Gail, Dean and Steven. We found out that the building has a rooftop terrace, so everyone is trying to plan a date to have evening “shots” upstairs. I ran out to the grocery store today and picked up some ripe avocados and some freshly made tamales. Easily the best tamale ever and the avocado was much better than we get at home. If anyone is interested in seeing the area around the apartment where we are, here is a link to the location of the apartment or you can look up the address in Google Maps:

Francisco L. Rocha no. 10 torre Unno
Norte, PH-A
San Jeronimo
Monterrey, Nuevo Leon 64640

Unno has two buildings with patient apartments, we are in the north tower.

Sunday, Day-7: Last night we updated Kim’s GoFundMe page. This morning her email was stacked with messages from friends and family. It really made Kim feel good, because she’s been cocooned here in the apartment, unable to get out. It’s Sunday and we obviously can’t go to Church, so we watched Mass on the internet. While I was out getting tamales, I spotted a Catholic Shop nearby. I brought Kim a little Mary statuette, which also helped raise her spirits. I also brought tamales back for some of the other patients. We have to enjoy them while we can, in about a week there’s going to be very strict limits on what everyone can eat. Of course, today was also a double injection day, one at 8am and one at 8pm. The goal of all this right now is to get as many stem cells out of Kim’s bone marrow as possible and circulating in her blood where they can be more easily collected. If this doesn’t work, it is our understanding that she may have to go through a surgical procedure to harvest the stem cells directly from her bone marrow. While this is unlikely, we pray that our whole group will be able to mobilize enough stem cells for collection.

A few other little notes. The electrical outlets here are the same as in the US. The dollar to peso rate makes things seem cheaper to us. Men don't wear shorts, if you wear shorts you are a tourist. Men don't wear sandles, flip-flops or sneakers - men wear leather shoes. You can eat food without getting sick and the people are very nice and appreciate my effort to speak Spanish. Places like Walmart and McDonalds are much cleaner than in the US and the employees are way more helpful and service oriented. You can't rely on sidewalks to be handicap friendly and people do drive like it's a free-for-all. Although I'm perfectly comfortable in Washington, DC rush hour - I'd never want to drive in this town.

Monday, Day-8: Kim is feeling a little bit better, she had more energy today. The clinic has also bumped up the script regimen to include an anti-viral (Isavir), anti-fungal (Itraconazol), and anti-bacterial (Sulfametoxazol/Trimetoprima). Kim is one of 8 patients. One other is from the US. The others are from Hungary, Scotland, England and Canada. Everyone is getting stir crazy being stuck in the apartment all day, every day, taking pills and getting shots. So the clinic took us to the grocery store today and then they took us to the Flag Monument (a giant flag on a giant 120 ton pole you can see from anywhere in the city). We all talked about the variety of side effects everyone has experienced, but the common one is a general feeling of exhaustion and weakness. It was good to get out, even better to share this experience with each other.

Tuesday, Day-9: This morning everyone had a blood draw. This is done to get a count of circulating stem cells. The initial chemo and follow-up mobilizer injections are mainly designed to get the bone marrow to release stem cells into circulation. There has also been some reduction in the white blood cell counts. After the blood draw, Kim had her mobilizer injection. Today the clinic staff arranged for the patients to have a bus tour of Monterrey. It wouldn’t have mattered where we went, it was nice to get out a second day in a row. Kim was feeling a little bit better too. Extra bonus, the bus had a handicap wheelchair lift. The tour ended at a nice Mexican restaurant where Dr. Gomez provided everyone with their blood draw results. Kim’s cells are mobilizing, but more slowly than the other patients. As a result, Kim will have one additional day of mobilizer injections and then a second draw will be done to test for circulating stem cells. Another patient is opting to have their stem cells harvested from their bone marrow. Kim would rather not have to do this. It’s been a long day. Kim is taking a little nap. The sun is going down over the mountain and the wind is beginning to howl outside.

Wednesday, Day-10: What looked to be a simple, stuck in the apartment day, quickly became a very full day with clinic staff and friends. Kim had a pair of shots and the staff came by to see what could be done to make the apartment more comfortable. Miguel (who proclaims that he is the best) fixed a blind, replaced light bulbs in 2 ceiling fans and took me to the grocery store. This wasn’t a scheduled trip, so I bought him a pack of tamales from the tamale lady and he read me the entire menu. They are also going to get a second grab bar installed in a bathroom and one on the bed for Kim. Paola came by the clean and sterilize the apartment too. In the evening we joined most of the patients on the roof-top terrace for a “clipping party”. Gail’s carer, Jacquie is a hairdresser so she shortened everyone’s hair in preparation for the coming third and fourth chemotherapy infusions. This was a very emotionally liberating time for everyone, gathered together to have control over their hair loss. It was a blessing to have Jacquie with us. Two patients had a surgical procedure done today for port placement in their necks. Kim will be getting hers tomorrow. Her spirits are high and she is positive with prayer and anticipation.

Thursday, Day-11: Kim had an early morning blood test at the apartment that confirmed her for port placement today. She was allowed to eat breakfast, but nothing more until the completion of the surgical procedure. That meant most of the day with no food or water. While getting the port was a significant step forward, on Friday Kim is scheduled for one more round of blood tests, stem cell collection and a third round of chemotherapy. It’s expected to be a very long day. At least she gets to eat. While we were out, Ulices came by the apartment and installed a second handicap grab bar in the bathroom and a grab bar next to the bed. This will make things much safer for Kim as she navigates the apartment. As the day closes, Kim is in a good bit of pain. I called Dr. Elias and he’s prescribing a stronger pain medication (Tramacet) that we have in the emergency scripts. Now we just need to wait.

Friday, Day-12: The Tramacet Kim took last night helped her get some sleep, albeit, very little. Her pain was greatly mitigated after a follow up dose before morning blood testing. Just about all of Kim’s fingers have little red marks on the tips from testing. Today was the longest day. It all started with blood testing in the apartment at 7:30 am. By 9:00 am the doctors had confirmed Kim’s stem cell count was high and she was ready for the stem cell harvest. At 9:30 we were picked up along with Jane and Steven and taken to the hospital for the harvest. The harvest itself took just over 4 hours. Kim had exceptional results, 16 million cells per kilogram. The collection process left Kim feeling very weak and I needed several other staff members to help transfer Kim to and from her wheelchair throughout the day. Following the harvest, Miguel took us back to the clinic for Kim’s third round of chemotherapy. This is the key to the entire therapy, now that Kim has a reserve set of fresh stem cells with which to rebuild her immune system, the following chemotherapy sessions are intended to purge most of the existing immune system that is thought to be causing Kim’s Multiple Sclerosis. Since Kim didn’t start Chemo until about 4:00 pm, Mario got us each a taco lunch box from a local restaurant. Extra bonus for Kim was that they gave her the option to remove the carotid port, which made her feel much better.

Other little notes: The apartment does not have a DVD player, maybe the staff would get you one, but I'm doing fine with my laptop and HDMI cable. We are entering the phase of the therapy that features a lot of downtime in the apartment, so, I would recommend to anyone coming here to bring DVD's and a way to hook up a DVD player to the TV. Most all of cable TV is in Spanish. The tamale shop is in the same shopping center as the H-E-B store. About 7-8 bays down from the recycle bins that are outside the H-E-B. Tipping is much more common here than at home. There's a lot of older guys who "volunteer" at the grocery store. They'll take your stuff out of the cart for you and bag your groceries. They are there for the tips. I've been giving them about 10 pesos each time I visit the H-E-B. I've been tipping the cleaning lady, Paola about 100 pesos when we see her, but will also leave her a tip at the end of the stay for all the times we did not see her. She's been doing a great job keeping the place clean, I especially appreciate that she washes the dishes for me. There is no dishwasher in the apartment. If you come here, plan on feeling as bad as you do when you are really sick. Bring your favorite soft clothes. Kim wants her clothes to be roomy and soft, so she has taken over the 2 supima cotton t-shirts I brought. I'm rotating them through the wash daily. Bring a few bandanas. We forgot ours. Would have been very useful to have. H-E-B does not sell them. If you need a humidifier when you sleep, bring one. I forgot mine and they don't seem to sell them in the stores. I even considered ordering one on Amazon, but the shipping was more than the humidifier. Don't buy a lot of sweets your first day grocery shopping trip. Once the chemo starts your taste buds are going to become sensitive to sweets and the sweetness of things will be magnified.

Saturday, Day-13: No blood test this morning and Kim was feeling much better. Miguel picked us up and drove us to the clinic for Kim’s 4th and final chemotherapy infusion. Compared to yesterday, she needed a lot less help getting transferred to and from the wheelchair. While Kim was getting her infusion we started reviewing some of the information about the upcoming Neutropenic Phase of the therapy. In a few days Kim is expected to have an extremely compromised immune system. In addition to wearing a mask, there will be major restrictions on what Kim can eat and touch. They are emphasizing a continuously vigilant effort to minimize bacteria for the remainder of our stay in Mexico and the weeks after we return home. Even little details, such as avoiding the use of razors, not having house plants and not eating any kind of seafood. The chemo went well. As the day comes to a close, Kim is starting to really feel the side-effects of the Cyclophosphamide. Hopefully she has more energy for her Stem Cell Transplant tomorrow, day zero on the linked chart. (click the "Treatment" menu item on the top of the page)

Sunday, Day-14: Today is the day Kim got her Stem Cell’s back. The clinic celebrates this as the patient’s Birthday because it is the first day of your new life. The procedure was comparatively simple when looking back at the process that preceded it. Everyone got a birthday t-shirt and a personalized birthday cake too. Me, being me, thought it actually was someone’s birthday because one of the patients at the clinic had birthday balloons. We also got a supply of freeze dried food for Kim to eat during the Neutropenic Phase of the treatment. Most of us are calling it astronaut food. It looks like the kind of emergency food kit you’d find in a bomb shelter. No one really wants to eat this stuff. Kim is taking this on as a challenge, she loves watching Cutthroat Kitchen. The staff also gave everyone a mid-therapy patient survey. I thought it should be improved. So, me, being me, started working to design a better survey for the clinic. We are also working to update the GoFundMe page for this last week. Regarding the survey, it’s really hard to rate the work of the clinic staff. They are like a family that has taken us in.

Monday, Day-15: Today is the 13th Anniversary of my proposal to Kim. It’s also the first completely open day on the clinic calendar, just scripts. No doctors, no tests, no shots and no IV’s. Kim is thrilled, mainly because we are going to get out again. The clinic arranged for a little trip to an air conditioned shopping mall that was having a craft fair. On the way back I talked Miguel into stopping at Pollo Loco for carry-out lunch. I’ve been hearing about Pollo Loco for over a week now from the transportation team, the adventurous side of me wanted to try it. I told him I’d buy him whatever he wanted and I’d get the same thing. I had no idea what he ordered, but the 338 peso ($18) bag was heavy, because, as it turned out, I bought us each an entire 8-piece grilled chicken, plus sides. This place had a huge grill that would make any Delaware Volunteer Fire Department envious. The chicken was excellent. When we got back we needed to get ready for a surprise birthday party for one of the patients, Warren who is from the UK. The clinic staff showed up with cake and sombreros for everyone. Everyone really needed a day like this. It all starts back up tomorrow with blood work at 7:30.

Tuesday, Day-16: There’s nothing quite like waking up early in the morning, starting your day getting stuck in the finger. Followed by a mobilizer injection and then into the van for consultation with Dr. Elias. Good news, Kim is on track and she is now neutropenic. She’s been having some issues with her feet swelling, so the doctor wrote her a script for Furosemida. When we left the clinic, Miguel drove us to 4 different pharmacies to fill the script, no luck. So we dropped Kim, Terri and Larry off at the apartments and Miguel hauled me around Monterrey to 3 more pharmacies before we found the tablets. Here’s the kicker, twenty 40mg prescription tablets were 40 pesos, about $2.50. I’m certain at home something like this would be priced $100.00 and my co-pay would be $20.00. The economy works differently here. While driving around, I asked Miguel about salsa. The local brand is La Sabroza. I got myself a bottle of the Salsa Verde Aguacate. Never had anything like it before, it’s made with avocados and it’s fantastic. As we close the day, Kim’s hair is starting to fall out. While we knew this was going to happen, it’s an altogether different thing to actually have it happening to you.

Wednesday, Day-17: Kim feels horrible this morning. At least there is no blood test and she got to sleep in until the morning mobilizer injection. Kim’s been very uncomfortable. I’ve been repositioning the pillows on the sofa, moving furniture around, elevating her feet and putting them down. Then elevating her knees and then scrapping all that and starting over again. It’s been a hard morning for her. We’re constantly washing our hands and wiping down surfaces with Clorox wipes. Every time I touch the furniture or pillows, I have to re-sanitize my hands. We have to take neutropenia very seriously. If that wasn’t enough, Kim’s losing her hair. She was literally standing at the bathroom sink tearing her hair out. Kim wanted all her hair off. So I borrowed a trimmer from the clinic and we sent out a message to everyone that we were having a hair trimming at the apartment. Gail popped over with her caregiver, Steven. I finished what Kim started and Steven trimmed off all of Gail’s hair. The ladies were very happy about this. After Gail and Steven left, I decided to trim off my hair in solidarity with Kim. This made Kim about as happy as she’s been in days. We are in this together.

Thursday, Day-18: I didn’t think it was possible for feel worse than Kim has been feeling, but it is. She’s really feeling, “I don’t want to eat anything” kind of sick today. I called the doctor and he told me to give Kim an additional med from the big box of scripts. She is feeling a little better, but super tired and very sensitive. I made her some of the “Astronaut Food”, which wasn’t too bad after doctoring it up with garlic salt and parmesan cheese. We had a regular appointment with the doctors today. They said Kim’s blood counts are all moving as expected and that her red count is improving better than most folks. Given how she’s feeling, we just want this to result in her feeling better tomorrow. She slept a lot today.

Friday, Day-19: Kim is feeling better today. The injection went better and I made her a doctored up pot of “Astronaut Food” tortilla soup. It was pretty good. This was the first day all week that Kim really enjoyed eating something. Hopefully this is a sign that she’s starting the upswing out of neutropenia. I’m not comfortable leaving the apartment during this time, so it’s good that we have a little store of food here to work with the next few days. It’s been raining and hazy outside for two days. To lighten things up for Kim I made her an "origami" elephant out of the bath towels. It lifted her spirits, she loved it. A couple days ago, the staff gave us paper and markers to make a welcoming sign for the next patient who will be arriving after we leave. When we got here there was a very nice sign that was left by the previous patient who stayed in this apartment - “You Are Stronger Than You Know”. While it was a very nice greeting the day we arrived, three weeks of stem cell and chemotherapy give this a lot more meaning today. Kim is stronger, we are stronger and we are confident.

Saturday, Day-20: While Kim has been having a tough time; a number of patients are having more complications. In no particular order some others have reported diarrhea, mouth ulcers, fatigue such that they can’t shower and spots on their face, just to name the ones that came up yesterday. Comparatively, Kim has done better and she’s feeling better today over yesterday. I’m also going to have to go grocery shopping. One of the clear indications that Kim is feeling better is that she’s asking me to cook more complicated things. Today she wants barbeque chicken. The funny thing is, I know exactly where barbeque sauce is in the H-E-B grocery store – the international food aisle. I’ve shopped there enough that I’m really getting to know the store. Since we have to make sure anything Kim eats is completely hygienic, I cooked the heck out of the chicken. I call this dish Charcoal con Pollo. Nevertheless, Kim liked it and I ate … tamales. Charcoal actually has a reputation for clearing dead cellular material from the body, so maybe I should keep cooking.

Sunday, Day-21: It is starting to feel like Groundhog Day (the movie). It is so easy to lose track of time here in the apartment. We broke out the Seinfeld and Warehouse 13 DVD’s today. We also watched Mass on the internet. Kim feels much the same as yesterday, maybe a little better. She’s eating a bit more, but that is tempered by her still being on anti-nausea medication. Kim will wake up tomorrow to blood testing with doctor “stick-your-finger”. In the afternoon she’ll get the results. Given the high stem cell count she had on day-12, we are hoping to see her immune system rebuilding at an accelerated pace. I started working on the welcoming sign that we’ll leave for the next patient who stays here. While it is something of an art project, it’s also a reflection of how Kim and I feel about being here and the stem cell/chemotherapy. Like most things, I’m taking this seriously.

Monday, Day-22: Today Kim had a follow-up appointment with Dr. Elias and Dr. Cruz to review her blood test. Great news! She is very close to coming out of neutropenia, the doctors expect her to have basic immune system defenses tonight. There will be one more blood test to confirm all this on Wednesday, but the great part is – no more Filgrastim mobilizer injections. This doesn’t change the need for Kim to remain fairly sequestered for several weeks after we return home. Dr. Elias also shared with us that the clinic is evaluating the benefits of the follow-up Rituximab infusions. He didn’t say much more than that, but it was clear that there may be changes to the one year follow up therapy we have been anticipating. I also finished the welcoming sign for the next HSCT Warrior who stays in this apartment. Among other things, it says “Tough Times Don’t Last, Tough People Do.”, which pretty much sums up how you need to feel everyday of four weeks.

Tuesday, Day-23: Late last night and this morning, Kim was feeling very weak. She couldn’t stand on her own and needed more help than usual. By the afternoon she seemed to me regaining her strength, at least enough to remind me a few times that she really wanted a Monterrey, Mexico t-shirt. They really don’t have tourist stuff at the H-E-B store so I got a ride to the plaza in the Monterrey city center. I found all sorts of shirts, hats and handmade bracelets. I also grabbed a bite at a Mexican café. This was easily the best chili relleno I’ve ever had. The entire lunch was about $4.00. I could not finish it. We are starting to think about returning home and seeing family and friends. But we also realize that we will very much miss the exceptional care of Paola, Ulices, Miguel, Marcela, Irving, Mario, David, and doctors Cruz, Elias and Gomez of Clinica Ruiz Hematology and Internal Medicine. As the day closes, Kim is a good bit stronger than this morning, but she doesn’t quite feel comfortable taking a shower.

Wednesday, Day-24: Kim was expecting a “prink-your-finger” blood test this morning, but instead the doctor decided to do a venipuncture. Kim hates having this done on the top of her hand and we asked to doctor to move up the arm, Miguel even asked in Spanish. Despite our effort, doctor “prick-your-finger” jabbed Kim in her hand – hope she has a better day, we know Kim will. After that we waited several hours for test results. As it got close to noon, we received the schedule for today’s Rituximab infusions. Kim was on the list! This was the final step in the 4-week therapy. Rituximab is a chemo-like infusion, the drug will be working to wipe out a specific class of lymphocytes commonly known as B-cells. The infusion was scheduled to go 4 ½ hours, but they were able to accelerate the procedure because Kim didn’t experience any side-effects. The doctors also confirmed that Kim is no longer neutropenic! This meant that Kim could have a carry-out dinner from El Gran Pastor, where I got us dinner the first day we were here. So tonight we celebrated the last of the medical treatment with a traditional Mexican steak and guacamole dinner. Kim has had a good day, a very good day.


ABOUT CLINICA RUIZ

It seems to me that this would be a good place to summarize some of the important links regarding the Clinica Ruiz and the Mexican Method of HSCT.

Clinica Ruiz accepts RRMS and some SPMS and PPMS with EDSS of 7 or less. Noted conditioning regimen: Cyclophosphamide and Rituximab.
Clinica Ruiz Registered Clinical Trial - Outpatient Hematopoietic Grafting in Multiple Sclerosis Employing Autologous Peripheral Blood Stem Cells
Publication: Ruiz-Arguelles, Guillermo et al. 2016 A Feasibility Study of the Full Outpatient Conduction of Hematopoietic Transplants in Persons with Multiple Sclerosis Employing Autologous Non-Cryopreserved Peripheral Blood Stem Cells
Publication: Ruiz-Arguelles, Guillermo et al. 2015 Outpatient Hematopoietic Grafting in Patients with Multiple Sclerosis Employing Autologous Non-Cryopreserved Peripheral Blood Stem Cells: A Feasibility Study

The address of the Monterrey Office is:

Hematology and Internal Medicine
Loma Grande 2717, Con. 211
Lomas de San Francisco
Monterrey, Nuevo Leon 64710

Here is a link to Google Maps. The wheelchair ramp you see with the pink rails is where we are dropped off each day for appointments.


NOTES

In case you are wondering why I'm continuing this in the antibiotics forum, as I see it ABX and Chemo are similar. Both are about wiping out stuff that is causing mayhem. I think one is simply much more intense than the other. I have been telling the other patients about the benefits of CAP, folks are interested. Of course, if this is successful, then it's possibly a moot point. My full discernment on HSCT and the selection of Clinica Ruiz is 3 posts above this one.
Last edited by notasperfectasyou on Wed Aug 16, 2017 6:10 am, edited 54 times in total.
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby Loriyas » Tue Jul 18, 2017 4:03 pm

Ken, I wish Kim the best of luck! Looking forward to your updates.

Lori
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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby notasperfectasyou » Wed Jul 19, 2017 9:14 pm

Lori,
Kim and I appreciate your kind thoughts. I don't have to tell you how hard this road is, but we are doing what we need to do because we can. I'll likely have a daily/or so addition. Stay in touch, Ken
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby Loriyas » Tue Aug 08, 2017 2:13 pm

Hi Ken,
Any updates?
Lori
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Re: In Pursuit of ABX - May I have coffee with my milkshake?

Postby notasperfectasyou » Tue Aug 08, 2017 3:37 pm

Loriyas wrote:Hi Ken,
Any updates?
Lori


Hi Lori, I've been updating the post a few above this one. I think I am up to over 30 edits to it. I have fallen behind, but will try to get it all caught up soon. How are you doing? We pursued stem cells with Sriram's encouragement. Ken
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
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