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Posted: Sun Jan 25, 2009 2:06 pm Post subject: Novantrone questions
If anyone still gets on here
My Dr's want to start me on Novantrone due to my MS worstening over the last year.
Thoughts good or bad would be greatly appreciated
Joined: Feb 10, 2006 Posts: 769 Location: Northern Virginia
Posted: Sun Jan 25, 2009 2:24 pm Post subject:
Most get a temporary boost from it that lasts while on the treatment. I'd personally recommend poking around here at TIMS and starting a thread in the main topics area. Welcome to TIMS, we are hear to help you with many of the questions we have already experienced. Good Luck, Ken _________________ My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />
BuzzMonkey, for some, Novantrone appears to help a lot. There is always a concern about cardio-toxicity though. Here are Pubmed abstracts from several clinical trials:
Posted: Mon Jan 26, 2009 9:25 am Post subject: Novantrone eperience
I reveived 8 of the 12 allowable Novantrone treatments after little success with ABCR. During my treatments I finally stopped producing new lesions and several MS symptoms began to abate. I was scared and intimidated by the "chem" label, but had barely any side effects at all. I stayed at home for a few days after each treatment - not because I felt bad but rather a precaution. I didn't lose any hair, never once vomitted. I got a little heartburn and some fatigue. My heart shows none of the side effects that are discussed.
My personal experience was very good. Good luck to you
I did my first Novantrone treatment on Friday, Feb. 6. Went well, minimal side effects. The plan is to have one treatment for the next two months then start Copaxone. The combo of the two may suppress my immune system enough to keep the MS from progressing.
Update: just finished treatment #3. The treatment must be cumlative. I do a blood CBC test about 10-14 days after the treatment to check the impact to my immune system. Treatment #2's blood work showed my immune system really took a dive. So much so, that before Treatment #3 they made me do another test to verify that the white blood cell count had come back UP. It did and I was able to take Treatment #3.
My normal recoup time was about 6 days. This means:
Friday - Day 1: Headache, tired, sleepy, semi nauseous
Sat - Day 2: tired, sleepy semi nauseous
Sun - Day 3 : more of the above
Mon - Day 4: tired, sleepy and less naseau
Tues - Day 5: Usually not 100% but I would return to work.
Wed - Day 6: same as day 5
Thurs - Day 7 - feel totally normal
After Treatment #2, I started losing major amounts of hair. So much so, I cut my shoulder length hair to shortest its ever been so the hair loss isn't so obvious.
This time, Treatment #3,, I wasn't feeling well enough to go back to work till Day 7, on Thursday, due to fatigue and nausea. Everyone kept telling me you look tired, why are you here at work?
Today is Day #8 and I am still tired. I plan to sleep alot and lay around most of tomorrow. I would like to do church and make a nice meal for the fam on Sunday, but I will be definitely taking it easier..
Now the Good News: I am sorry if this is TMI - Too Much Info, but I actually feel Horny!!!!! After having my 'mojo' be missing in action, I actually have been dreaming sexual dreams and thoughts of a 'wild and crazy' nature.
Have not told hubby yet. I am going to rest alot this weekend and hope I can get the kidlets out of the house so I can seduce their dad. WoooHOOO!!!
Plus I have had some reduction in the amount of numbness in my legs. Which had been steadily and slowly progressing. I have PPMS. So anyhow, will try to post.
Posted: Tue Sep 22, 2009 4:51 pm Post subject: First treatment
MS is getting worse. Progressing faster than neuro likes.
Have tried Rebif, tysbri, now novantrone.
First treatment was September 3, 2009. Went ok.
Only side effect was slight nausea.
Weekly blood test to monitor white blood cell count.(4 weeks).
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