Chemo Treatment for Multiple Sclerosis

[reaching]

Wow..thanks for all the information regarding chemo. I'm pretty scared with this whole MS thing. I've been diag for over 11 years and i'm "slowly" getting worse. My husband wants me to do the Chemo therapy, but I don't know if I can emotionally deal with it. I need family support, wish I don't have and I need to be strong mentally for it, wish I don't have.

I'm on Beta S. right now and I've been on it for years. I was on Copaxon, and three other types of meds, but they didn't work. I was getting more lesions. Well Beta S. seems to be doing good for me..though I have had some more lesions.

Now that i have a permanent drop foot and my cog is severe, my hubby wants me to start the chemo sooner than later. I just don't know if I want to. I think I'm scared of "it not working". That would just put me on a downward spiral i guess.

So much to think about......

[Beachcomber]

Here is important information about "chemo brain" (brain fog), brain atrophy, and more:

Novantrone warning: After my third infusion (half of life-time limit), my menstrual cycle stopped; thankfully, I didn't want more children (so I was actually pleased with this "adverse effect," as my doctor called it and reported it). Had been hopeful that it would also stop menopause but no such luck.


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[Pipes123]

I don't have any personal experience with this.

When I asked my neurologist, he made a distinction between chemo (novantrone, mitoxantrone) and mononclonal antibodies (Tysabri, Lemtrada/ Alemtuzumab, Rituximab).

My neuro said he would suggest monoclonal antibodies first before trying chemo.

[betterme]

Had first Chemo IV this afternoon.

I'm back. I had my first Cytoxan infusion this afternoon. I did not realize it was the same as Cyclophosphamide. It looks like Maryjane135 and I have this treatment in common so I am kind of bummed that it has not helped. I guess I had better buy a wig or bandanas. I lost much hair with prednizone but apparently I am in for a new experience. I will keep you updated. I am to get the infusion once a month, with blood work and urine tests every two weeks. Fingers and toes crossed.

[Kimba22]

Hi betterme,

I really do hope it benefits you. Sorry nothing else has worked so far for you. Everyone responds differently, please remember that, OK?

I also had 6 doses, once a month for six months. My MS Specialist said he would consider treating me up to a year, depending on how I responded. It stabilized things while I was on it. But, once I stopped, things started getting worse. My options were getting limited then. I had been on 3 of the injectables (all the interferons), and had bad reactions to all of them.

Couldn't do Tysabri back then, because of an implanted device that was not MRI compatible. (Didn't feel comfortable with the option he gave me, which was lumbar punctures every 4-6 months.) Every neurologist I ever saw crossed Novantrone off the list. None felt comfortable with the safety profile in regards to the heart. Did Copaxone afterwards (no luck). Gilenya was great, until my WBC counts tanked. Am now finally on Tysabri, but only because I'm JC virus negative and had surgery to replace the implanted device.

Anyways, I did not loose my hair. It sure shed like crazy, though! Wasn't long after I stopped, wondered where all the split ends came from? Turned out it was really hair that was growing back. But, what it did do after only one treatment was put me into premature, drug induced menopause.

Drink plenty of water following the infusion. My MS Specialist didn't make that clear enough to me. I had someone with me, who never "heard" that part either. It was close to Christmas, and never got that information from the infusion nurses, either. I think we were all preoccupied with the upcoming holiday.

Christmas Eve day, I developed something called a "bleeding bladder." And of course, my neurologist's MS clinic was closed. Would be closed until after Jan 1. I was told he'd gone out of the country. I was told to drink lots of water and head to the ER for further testing. Never went, had decided I'd go the day after Christmas. Everything looked better after I drank like a fish again for a couple of days. Everything was fine, and my MS Specialist did end up calling me. He did not recommend the ER and further testing ... said it would only put me at risk of a UTI at that time.

The dose Maryjane called induction that she had is also called HiCy therapy. She had 5 doses in just 7 days. Then she had it monthly. She said her hair grew back then. I just realized she had a total of 43 infusions. She had a total of 33 monthly infusions on top of two HiCy treatments. Wow.

The single, monthly dose is much lower than what cancer patients get. But, everyone is different. You might still have some thinning, maybe more than you expected. Hard to know. I figured I'd rather wear a wig and keep walking than worry about my hair.

A couple of times I got pretty sick afterwards. I thought the dose was being changed. Nope. Strange it affected me so much some months.

Best of luck to you. I really hope you have a positive experience on it!

[Maryjane135]

Hi! I wanted you to know it did help me for a few years and if I could get one of my docs to agree, I would love to go back on Cytoxan. My first induction was a year after diagnoses, the second was two years ago. I did not lose my hair with monthly, only after induction, and it was within two weeks after. Being bald bothered me at the moment but I quickly developed a "whatever" attitude.

One thing I would tell someone getting this therapy is to take Advil Cold and Sinus about an hour before. It REALLY helps! I am here if you need anything- I lurk, rarely posting. Jen

[Grace53a]

I'm an NMO patient and have been using Rituxan for nearly eight years now. I've only experienced two minor events since I began using it. During the first two years of my disease course, I failed on other medications so it became necessary to use more aggressive treatment, and my neuro's choice was Rituxan. It's been an excellent drug for me. I will continue to use it for the remainder of my life or until I fail on it, whichever comes first.

Rituxan is anti CD20+ and reinfusion is recommended once the CD19 starts to recover, or is at a level of 1%. That being said, for an NMO patient, it's important to remember that it's purpose is to hopefully prevent relapse and to mitigate the severity if and whenever a relapse occurs. It's purpose is not to address residual symptoms, but rather to help one to attain neurological stability.

I have more than a few MS friends who are using it with very good results. One is a PRMS patient and she has done exceptionally well, after having failed on other medications, including Tysabri.

Grace

[lynng1776]

chemo treatment

i was offered to think about it,but drs told me there is a limited number of times you can use chemo, so maybe save it for something possible down the road.

[reaching]

Yup...I'm going to think more about the Chemo thing. I may want to use it in the future when or if things get worse than they are right now. I'm back at work and with a lot of accommodations and things are looking good...thus far. Thanks all for your advise.

[betterme]

Cytoxan Update

Hi. I had started this chemo treatment at the end of October. I only had that first treatment because my white blood was too low. I ended up being in great pain and after a visit to my general practitioner and having had 2 more mri's (ouch!) it was determined that I have Multiple lesions in the visualized cervical and thoracic spinal cord. I was at the point where I was falling a lot from June to present. My worst fall was in July so I wasted 5 months of treatment because I "assumed" that my chronic pain was from the ms. The ms resulted in instability and falls but the pain was due to spine damage. I have an appointment with the pain management department at the hospital in a couple of weeks and will soon find out whether surgery is needed or if they will start treating with chortozone shots in the many lesions in the discs.

I would highly advise everyone not to assume that ms is your only health issue. I have had done much more damage than needed by using first a cane, then a walker, and now a wheel chair to get around. Well wishes to all and may you have a HAPPY NEW YEAR!

[Diamond57]

Question???? For those of you on chemo......what type of MS do you have. I am RRMS. Please give me some feedback.

Thanks in advance

Susie Q

[AnneShirley]

Rituxan

Well I just had a series of MRIs due to increased symptoms. Showed 2 new frontal lobe lesions and 3 new thoracic spine lesions. I have advanced to secondary progressive MS. My doctor has sent to insurance for Rituxan treatment. Anyone have trouble getting it covered? I have Medicare/Medex three. Anyone who can tell me how their first infusions went?

Lauren
Dx. 2010
Former RN/BSN

[dingo]

Started Rituxan in December

I just started Rituxan in December, first treatment was split into two ½ dose infusions in case I had a negative reaction. During/after the first infusion on Dec-10, I got slightly nauseous and then had flu symptoms for about 24 hours, felt fine later the following day. I had the second ½ dose two weeks later (yes on Christmas eve!) and felt much better afterward, just tired and groggy so took a 3 hour nap and slept it off.

Funny that I am more like your husband, male and wanted to start right away after reading every bit of information I could find about it, but I am the one with MS (“a mess” like my wife thought when I first told her about it when we started dating). My wife was basically against it, wanting more information, proof that it works, and that I won’t die, a possibility that is listed for just about every drug out there! But I felt/feel that I am on a time crunch! I want to maintain my current quality of life!

Just a bit of history to fill in the blanks, I am 57, otherwise healthy, was diagnosed when I was 35, had weird tingling, numbness, etc. as far back as when I was 17, before MS awareness. I was RRMS until about 2 years ago when I progressed (sounds like an oxymoron) to SPMS. I have worked my whole life and have always been very active, both mentally (good thing?) and physically.

We are all different, have different lives and lifestyles, react differently to things, etc.; what works for one may not work for another, and vice versa. And it is hard to do a long term study on ourselves with no one else to compare to. With that said, I have tried several of the available drugs out there with what I believe have provided minimal results. Most treat symptoms only or had some really bad side effects. I started with Avonex, then Rebif, then Copaxone, stopped taking it a few years ago, refused to try Betaseron (shot burnout for me), and have not noticed any significant improvement in the 15+ years of taking them. I have during that time taken several different oral drugs to help manage symptoms, and now only take Gabapentin at night to help with spasms and sleep.

Me and drugs and needles:
I hate needles and I do not like taking drugs… unless for fun or social drinking! I never looked (just to aim) when I gave myself an injection, don’t look when I get a blood test, could not look when they connected/disconnected my drip line fore the infusions. I only ever take ½ the prescribed amount of OTC meds… wait and see if I needed more.

I was scared to start Rituxan… I mean update my will and notify my family scared! But I am fortunate to have… the best wife/partner in the world, 50 million to 1 to win the lottery, and 7 billion to 1 to find the right one… I won more than the lottery!! My wife is all in with me, even though she had more hesitation and doubt than I, she was with me the whole time during the infusions which took about 5 hours, brought Starbucks, food, reading. Am I making anyone cry… or sick? Sorry, but I guess it just emphasizes the importance of a strong support system for us, and empathy for those who are even less fortunate. Once I got comfortable with being in the Oncology/Infusion center, seeing the other patients in there and in the waiting area, and the doctors and nurses, it wasn't so bad. I will be going back every 6 months indefinitely or until something better comes along, maybe getting new stem cells.

Anyhow, I think I have used up my allotted time, and although I can type pretty well with one hand (I still have both), it takes much longer than it used to.

Other answers:
I have Kaiser which covers everything.
“No, my hair did not fall out… at least my receding hairline is not due to Rituxan.”
Should read Kimba22’s explanation about Rituxan; it’s excellent!

Levity is my friend.

[Robert Foyder]

CHEMO

Recent info stated in the source material that travels through the many sources concerning Chemo as treatment option.
In a recent article in Neurology Journal ,there was mention that before Chemo should be used...the MS Patient should be tested for the JC virus/PML .
Chemo (general term) is a immune suppressant ,as other MS Drugs like tysarbri or most pills, infusions,injections.
The question being what medication passes through blood/brain barrier ,activating virus.
Since there a possibility of 50% potential of patients carry such a virus ,tests most done to establish if the Patient has PML.
As a MS Patient and not a Health Care Professional this writer suggests a dialogue take place with their Neurologist.
Hopefully, the Neurologist is a good listener & testing is done.
Though there are "just in case protocols" for Plasma exchange, patient monitoring during infusion, some preventative steps should be taken in testing.
As a MS Patient Advocate, with every new discovery or treatment ,naturally there is excitement in the search for a cure. It is known to some patients that some Fuzzy logic can be used: IF this drug doesn't work,the suggestion can be try another.The Patient needs to be empowered before the needle is inserted. We trust our doctors to make the best good & welfare decisions but the patient also has a say???