Phew. What a week.
I'm exhausted and it's only officially day two but on *MY* timeline it's day seven already.
I will be updating everyone daily on chris's site, www.chrishasms.com
but due to my tardy response to Chris's wife's email I'm a bit behind, I'm posting what I've got so far here on this site but will probably just post on Chris's site going forward - this is current up until last night.
Mel's recovered well from the first dose of chemo and is snoring gently next to me as I type this.
Here we go:
First, a bit of history: We went to see Dr. Kerr, Dr. Hammond et al on March 5th 2008. Mel had a very thorough work up, EDSS review, MRI review and a long, informed talk about treatment options.
All options were discussed, the usual interferon choices, copaxone, tysabri and even FTY720 an oral drug with an approximate effectiveness of Tysabri. Melissa decided on the HiCy treatment after it became obvious that she wasn’t responding to interferon and in many ways the interferon made her feel as bad as the MS does.
Precisely because Melissa is young (32), fit, early in disease course (dx’d Aug ’07 – Rebif since Sept ’07) HiCy jumped out as the best option. This is the opposite of conventional wisdom that says if this is considered it should be a last resort.
Yes Mel wasn’t responding, yes she had some ‘black hole’ areas on her MRI and obviously enhancing lesions but her EDSS is ‘only 1.5’, my argument is it was zero 6 months ago. Should we be happy it’s ‘only’ a 3.0 by the summer, then ‘lucky’ it’s ‘only’ a 5.0 by Christmas?
If you mention HiCy to your neuro do not expect them to be informed about it, you have to be your own advocate, ask them to read the Hopkins research, especially ‘High Time For HiCy’ (google it).
Our neuro received the link but clearly didn’t read it. Or if he did he read it he did so through the filter of a made up mind. His email to Dr. Kerr that we were copied into was referring constantly to the pulsed dose of Cyclophosphamide, which is not the same and has been used as a last resort for people going downhill fast.
From first meeting with Dr.Kerr to insurance approval took 6 nerve wracking weeks. Pretty fast in medical terms but slow as molasses if you have MS, we had to keep reminding ourselves to get a bit of perspective.
The day to leave for Baltimore finally arrived, Mel had bought me a TomTom for Christmas, I entered the destination address and set off. Only 1548 miles to go.
In anyone’s terms that’s a long way but being English? If I attempted to drive 1548 miles in England it’d be a very wet drive as I plunged into the Atlantic Ocean!
I had first discovered HiCy/Revimmune online in late December. We were on a vacation of a lifetime in the Maldives, paradise on earth and I was sat in our luxury room googling for MS treatments whilst Melissa lay in bed gradually losing feeling in her hands and feet, sleeping 20 hrs per day. Not good times.
To be frank, I was scared to my bones and losing hope. I thought to myself ‘this will probably be the last nice holiday we go on’. Or certainly the last holiday that is a 22hr flight from Houston.
I stumbled upon HiCy and as a result www.thisisms.com
and then www.chrishasms.com
, as it happened my timing couldn’t have been better, a user on thisisms was describing his treatment (look for posts by the user name HiCy) and Chris Young from thisisms/chrishasms had just sent his details to Hopkins.
After driving through Texas, Louisiana, Alabama, Tennessee, Georgia, Virginia, Washington DC and finally Maryland we arrived at our apartment. I won’t go into too much detail about the drive but suffice to say it was long, uneventful and filled with McDonalds wrappers.
We left on the Saturday and arrived on the Monday, April 21st.
Monday afternoon was uneventful, got settled at the apartment etc, Tuesday things started for real.
Tuesday April 22nd.
First trip to the Weinberg Building. This houses the Sidney Kimmel cancer center, the radiation facility and of course IPOP. This is where the majority of our time will be spent in Baltimore.
First to phlebotomy for a bucket load of blood work. 10 vials. If you do this treatment, get used to giving blood.
The next appointment was with the legendary Dr. Brodsky. I’d just like to say that this guy is so interesting to talk to and a top, top man.
Dr. Brodsky talked through the treatment, what to expect, what to do and what not to do. He explained it like this.
Four things could happen. Two of these WILL happen.
1)You will lose your hair. Not immediately, but you will, perhaps not 100% of it but you need to mentally prepare yourself for that. For all of those who wonder why your hair goes in chemo it’s essentially because chemotherapy goes after rapidly dividing cells, your hair follicle stops producing hair and eventually the existing hair is pushed out of the ‘socket’, this happens around two weeks after the chemo. This will happen in about two weeks.
2)Neutropenia. Kind of the whole point. To borrow a phrase from Fox News the ‘collateral damage’ is your red blood cells and platelets. The target is your white blood cells/lymphocytes. The purpose of this high dose course of chemo is to get your WBC counts down to zero and in doing so destroy the ‘attack’ T-Cells and ‘memory’ B-Cells that have erroneously learned to attack your myelin. This will happen and this is the ‘dangerous’ (although I prefer to think of it as ‘managed risk’) part.
You have essentially zero ability to fight infection on your own, you are without an effective immune system for a period of time. Fortunately in MS patients who have normal blood counts prior to treatment that period of down time is around 8-10 days which is why the post-chemo care is the differentiator for Hopkins/Accentia. The lack of red blood cells (the cells that carry oxygen around the body) causes fatigue and weakness. The lack of platelets reduces your body’s ability to clot blood. Most people will need blood transfusions during the treatment. Some don’t but most do. In the IPOP center you will receive daily prophylactic anti fungal, viral and biotics.
3) Nausea. Dr. Brodsky explained it like this. 10-15% of people get no nausea at all, 10-15% get severely affected, the rest are in the middle.
4)Diarrhea. Same as nausea really.
Infertility. For women this goes up in risk the older you are. For Melissa (32) there is a small risk of ovarian damage. A risk that she is willing to take.
Secondary malignancies, i.e. cancer caused by the chemo. Extremely slight risk for this one time treatment. This becomes a risk when cyclophosphamide is used over an extended period of time.
Some background on HiCy from Dr. Brodsky’s perspective. This has been used on Severe Aplastic Amenia patients for 30 years + with outstanding success. The life expectancy for SAA patients who have failed regular treatment back then was approximately one year. 30 years on people have normal blood counts.
(Side note, Dr. Brodsky just stepped in to check on Mel. He’s a nice guy.)
In fact and this is a direct quote from Dr. Brodsky - “I can confidently look SAA patients in the eye and say this treatment has a 70% chance of curing your SAA”.
If you know anything about SAA that is remarkable.
Even more encouragingly he thinks that the underlying mechanism and lymphocyte type of MS and SAA are similar so is hopeful that he will see similar or better results, the advantage MS patients have is that their stem cells are still there and unharmed unlike SAA patients who may have lost a high percentage of those cells.
They’ve had good results with Myasenthia Gravis but the disease returned in some patients. One example is a woman who was disease free for four years, the MG came back and she’s redone HiCy. Six months later there is again no discernable disease activity.
Which leads me to the new hot off the press treatment change, Chris has mentioned this on his blog but the method of action of Copaxone is thought to be a good way of ‘training’ the immune system once it’s reconstituted, in animal models (and let’s face it how many times have we heard that?) it’s been shown to direct the body to not respond to the ‘trigger’.
Still, it can’t hurt to take 6-12 months of Copaxone, best case MS never comes back, worst case? Well, nothing really, apart from the expense and inconvenience of daily injections. A miniscule price to pay if it works.
HiCy gives lupus patients only around 6 months of relief and has variable success with other autoimmune disease.
The reason for this is unknown but it is hypothesized that different diseases are responding to different lymphocytes some which are long lasting and aren’t killed by HiCy. As Dr. Brodsky called it – it’s a reboot not a reformat. Hopefully a reboot then an upgrade with copaxone will do the trick.
We went back to the apartment, got changed, then went to the James Joyce Irish pub to watch Liverpool v Chelsea and have some lunch. Last few days of freedom for Mel.
Two days to go.
Wednesday April 23rd.
Arrived at Hopkins at 12pm for more bloodwork, patient registration, consent forms, meeting with IPOP nurse.
Bit of a messy day.
Turns out the bloodwork wasn’t needed and our 1pm appointment ended up being a 4pm appointment which put us late for our IPOP appointment. Frustrating but not really anyone’s ‘fault’.
Registration raised some issues apparently United Healthcare had only approved one day of inpatient care. Frantic phone calls later revealed that this is standard for UH. They approve daily, it was no big deal as it turned out but shocking at the time.
We met with Dr. Hesdorffer, another very interesting and knowledgable man, originally from South Africa he took nearly 40 mins to rub it in about the rugby last year which was decent of him! West Ham fan too, but apart from that he’s alright. He went through the protocol again, they certainly give you every opportunity to change your mind, and consent forms were signed. Admittance for Thursday was confirmed.
Dr. Hesdorffer and I talked about how we’ve been following the progress of other people online and I mentioned Chris. No patient doctor confidentiality was breached but Chris’s response to HiCy was considered pretty amazing, he arrived in a wheel chair and three weeks later could get up out of it for short periods, as we know from his blog this improvement is lasting and continuing.
EDSS scores going down? In MS? With HiCy this is the EXPECTATION now. Get it early and get it good.
Foods to avoid pre/post chemo: Any ‘thin skinned’ vegetables/fruits, i.e. an orange would be okay, an apple not so much. No uncooked vegetables.
Being English I like to use the ‘boiling the shit out of it’ method of cooking so no problem to the temporary chef. I.e. me.
Avoid people who are obviously ill. Avoid small children for the first month. No kissing or sleeping with your dog! (Several obvious jokes removed – Ed.)
Chemo stays in your body for 48 hrs after treatment, you urinate, defecate and perspire it out. If you have two bathrooms keep one for the chemo patient. Wash all clothes and linen separately, with bleach and twice.
This bit is in bold for a reason. Fever – do NOT fight it. Monitor your temperature carefully, for the purposes of HiCy a fever is considered 100.5. At that point you must call the IPOP number, if it is around day 10/11 of your treatment they are likely to tell you to take some Tylenol and monitor it carefully, as a fever is common once your stem cells come back online what you should not do is try and fight it until told to do so a fever is either natural or a sign of an infection, let them figure that out.
We met the IPOP nurse who gave us a binder of ‘do’s and don’ts’ and also some prep work for us to do.
They also gave us a list of things you can and can't bring, I'll post that in due course. For those people coming from out of town it would be handy to have prior to travelling to Baltimore!
The night before having your hickman inserted you need to thoroughly sterilise yourself. They gave us some antibacterial pads the procedure is as follows:
1)Shower, dress in clean pj’s.
2)Dab your arm with one of the pads, wait 15 mins to see if any allergic reaction occurs
3)If no reaction swab your entire body. Let dry, put on another set of pj’s.
4)Next morning DO NOT shower. Swab your body again. Put on clean clothes.
Here’s a helpful hint for the ladies that Mel learned the hard way. Do not, repeat, do NOT shave your legs prior to doing this. It will result in a painful itchy rash that hangs around for ages. Check your makeup, beauty regime and modesty at the door, you’re having chemo, you can look a mess. It’s allowed.
Thursday April 24th.
HiCy-Day, and incidentally my Granddad’s birthday, he’s been going through a rough time in hospital too – happy birthday Granddad. I’m glad you’re still with us – I’ll see you in August hopefully.
We got up bright and early to head to the main hospital for Mel’s Hickman catheter/centre line to be placed. http://en.wikipedia.org/wiki/Hickman_line
explains the ins and outs of this but essentially under sedation a line is inserted into your heart for infusion of the chemo and other drugs.
The procedure takes about an hour and Mel found the aftermath pretty painful and uncomfortable. Once it’s done though the other IV’s can be removed and everything is done through the two ‘sockets’ that dangle out of the chest.
Once that was complete we had to wait for her room to be ready, the sterilising of the room takes up to two hours.
We were in the waiting room with a number of cancer patients that weren’t in very good shape, MS is a dreadful disease and I’m not trying to play ‘disease top trumps’ but sometimes it helps to get a bit of perspective.
Thursday was a long, long day. I eventually got back to the apartment at half past midnight, Spanky our dog had his legs crossed and has never been so glad to see me.
Mel started the chemotherapy at 10pm. Prior to that she was ultra-hydrated for two hours and had some other medicines, a sedative, anti nausea, a medicine to protect the lining of the bladder, and a saline drip.
Pretty much straight away she got a headache from the chemo, they gave her some oxycodone which helped after a while.
The nurse putting the IV cyclophosphamide togther had a fully white tox-suit on, pretty spooky.
She drifted in and out of sleep and about 15 mins after the chemo finished around midnight I left to release the hound and get some sleep, although sleep was a hard time coming, I must have checked my phone to make sure it was on and was set to ring not vibrate approximately twelve million times.
They do have visiting hours here 7am to 11pm but they aren’t strictly observed and I get the feeling if she was having a particularly bad time then I could stay.
All in all things are going well so far. We’ve had some apartment trouble and some car trouble but overall things are okay. The people here are superb, every single one of them.