[Deborah]

Hi. I get those chills without fever. A blood transfusion seems to work wonders. In the meantime, I have a very large deluxe heating pad that I keep nearby or on me on LOW!

[Deborah]

Hi, I have same MDS as all of you, diagnosed in 2011. I was on Revlimid for 3 years. In the beginning, I took 5 mg every 3rd day. Later, i took 10 mg every 3rd day. These doses were settled on after a lot of trial and error with side effects. I had sporadic diarrhea the entire time. Hand tremors were one of the worst side effects I had from Revlimid. After about 2 years, I did mention that I was having loose stool for the last 3 months. Just to be safe, we decided to do a c-diff test. It was positive !!! Don’t write off all of your GI symptoms to the meds!!! You could have something. I believe that the Revlimid had ceased to work at that point and I should have gone off of it. I stayed on for another year until I got so sick and anemic, we all thought I was on the way out. In retrospect, I was also being under-treated. A case of benign neglect. A change of venues and doctors to an MDS Center of Excellence at UCSD turned everything around and I can’t recommend that course of action enough! The subsequent treatment was arduous and unpleasant because I had gotten much sicker by staying on Revlimid after it stopped working. They put me on IV Vidaza…..got a port placed…think I’ve had 20 rounds over the last 2 years. Biopsies show little change from last year and I’m not showing the 5Q Deletion anymore but there are different anomalies now(It may still be there they say….. but it has hidden for the last 5 biopsies if it is) The disease has weirdly stabilized in the White cell lines and gotten much worse in the Red Cell lines. Platelets are still ok. We think I’m at the end of Vidaza’s effectiveness as well. Procrit shots don’t work like they used to either. I am going with transfusions for now and enjoying some time off!! It’s hard to be “in treatment” actively for over 5 years. I had side effects to every drug they gave me and lots of GI issues. Good luck to the other patients starting on Revlimid. I hope it works for a long time for you.

[Deborah]

Bummer… They’re going to treat this the way they’ve done with Agent Orange and Gulf War Syndrome and Rocky Flats and delay, delay, delay! Infuriating. I believe, sadly, that this is an actuarial strategy by the VA. I was told early on that my MDS was ” most likely” due to exposure to benzene that I was around at the small airport in my hometown as a child. The crop dusters for cotton worked out of there; their chemicals were everywhere. Leaking barrels, puddles…I was around it a lot as a small child. I’ve probably had MDS for 10 years and was diagnosed 5 years ago. No evidence until I’m in my early 50s. How do they expect us to show direct cause? There is a lack of data problem. I’m very sorry they denied you

[Deborah]

Hi Karen, Of course, no one can make that decision but your dad. I would listen to his doctor about quality of life. Vidaza is known as one of the “not terrible” chemo drugs; and they’re right. But, it is still a strong drug that is going to probably have a few side effects and they will be unpredictable. The drugs they give to prevent nausea can also have their own complications. There is often a steroid involved. Taking Vidaza is not a walk in the park for most. I can only imagine that a round of Vidaza on top of the issues he’s already dealing with, low immune system and fever, frailty from pneumonia etc might be too much! I kind of want to go into Vidaza strong!!!! I get weaker every day as the medicine builds up in my system. Vidaza will cause his numbers to fall into a nadir about a week-10 days after last dose. The hope is that his numbers will recover after the nadir and his marrow will start making more mature cells. I was advised that it would take at least 4 rounds of 7 days each, to see any improvement. I had no improvement until after round 9 😱 A lot to consider and a lot of other things I’ve forgotten or don’t know. I am 63 and I’ve found it to be extremely difficult. Yet, I still take Vidaza, but not every month now.

[Deborah]

Another post for Jane: I have been told and seen that patients can fall into bone marrow failure very rapidly and die very soon after diagnosis and starting treatments. Try to get her to rest and support her nutritionally. Get the help you need from her center: physical, emotional, spiritual,everything. Good thoughts to you and your mother.

[Deborah]

Jane, I’m sorry about your mother. This is a hard road. No bones about it. I have not tried either ginseng or B12. I was told the B12 wouldn’t hurt. No info about it. The big thing about all of these blood diseases is that their forms and patient’s reactions to them and their treatments are incredibly varied. Very few respond in the same way. Makes it hard to develop any help. The fatigue is awful and depressing and debilitating and I have found no way other than to go through it: you must rest, rest, rest. If you are too fatigued to walk, you especially need to confirm with blood tests that her levels of hemoglobin aren’t too low. If she can’t walk, get into the house safely, you need to address that with her oncologists and their team of social workers for every kind of assistance! I have been treated at MDS center for excellence at UCSD and am now back home in Denver being treated at a small hematological practice and infusion center close to my home. They BOTH offer the same extremely broad access to patient and caregiver support. It is free also! bTW, after my 15th round of Vidaza, all my numbers are low again…..no special reason why other than that I’ve been on Vidaza for a long time. I’m getting and needing blood transfusions again and Neupogen and Procrit; haven’t needed them for a long time! No particular reason why. A person like me can apparently survive for a long time with lots of ups and downs and constant treatment or relatively calm periods where I just get the Vidaza and recover pretty fast. After 14, I never recovered. They won’t give a prognosis because they don’t have one. Your mother’s age is not in her favor. Read the post after my other post. I support that point of view 100%. If there is anything else you are questioning, please ask me. Sometimes, might have a trick that might work. It is a bear.

[Deborah]

I would like to second that recommendation: go to an MDS Center for Excellence!
I stayed with the oncologist that diagnosed me for 3 years. I went to an MDS Center of Excellence when I was so sick I could not walk. It was worth the trip. They knew what to do and how to do it efficiently and effectively. I went to UCSD, San Diego, to get myself on the right path to living again. My home is in Denver, so I have transferred to the Center here in Colorado,CU, even though it isn’t particularly convenient for me. Worth it!

[Deborah]

John, I was on Revlimid 5mg and 10mg at various intervals for 3 years and I never had any aching or pain. I’ve been on Vidaza for a year now, and starting having lots and lots of bone pain, joint pain, and generalized aching since month 8. Never before. My oncologist said that the meds are stimulating the bone marrow to do its job better which causes the pain. I look at it as a sign that the drugs are working! Maybe that isn’t true! They suggested I take Claritin daily along with Naproxen (or whatever OtC pain med I do well with)if needed. It keeps the pain level manageable. Moving seems to help a lot. Even standing. Lying around seems to be the worst thing I can do. I hope this helps you. I also read that they were showing some results using Zyrtec as well. The literature talks about the histamine released when marrow stimulated creating the pain while the anti-histamine gets rid of it. Makes perfect sense to me! But maybe your pain is from the MDS or the Revlimid. We all react differently to the same drugs and conditions. This forum is proof of that.

[Deborah]

I will begin my 13th round of Vidaza tomorrow. I am 63 yr female diagnosed MDS 5qdel approx 5yrs ago. On Revlimid for 3years at varying dosages and regimens. I believe I should have been taken off of it after i contracted C-diff while on it! Anyway, I finally started Vidaza IV June, 2015. I was very weak, anemic, no neutrophils, and vomiting daily before I started. Extremely low WBC, RBC, and neutrophils. Platelets fine. I needed a port to even do blood tests! Took a long time to control the vomiting (4 rounds) Most people have no problems with nausea with a little premed . The magic drug for me was Kytril injected into iv about 15 minutes before Vidaza. The main side effect I’ve had from Vidaza is fatigue. Anyone that tells you that fatigue is not a side effect of Vidaza is blowing smoke! It’s in all the literature and it is very real! After you go through your nadir, everything gets better including energy levels. The further I get from my 7th day of Vidaza, the better I feel until I’m practically dancing by the last week. I’m on 7 days and off 21 days. I never had any huge improvements in my bone marrow biopsies after 3 months nor after 7 months. I really started to get out of the low blood counts after month 8 with better and better monthly blood counts. I never had any bone or joint pain until month 8. Joint pains and overall aching has increased with each monthly dose since then. My oncologist suggested that I take Claritin daily along with Naproxen if needed. It keeps it manageable. I haven’t been able to find any info on long-term use of Vidaza. When I find a forum on Vidaza, it seems like many people are in bad shape when they start and die after a few months. That has not been very encouraging but my numbers are staying pretty even and I feel much much better. For now, that’s my screed on Vidaza. I have 3 oncologists right now. Transplant is what’s recommended but I really don’t feel emotionally able to deal with that….. I do really poorly on steroids, especially my head!! Staying on Vidaza as long as possible and waiting for the next big discovery has been approved by 2 of the oncologists as a viable and reasonable approach to my MDS. Not having any blood relatives for marrow, makes my odds too low for my liking. If you’re new to Vidaza, If you have any questions, ask me here! I would like to be able to help anyone. I felt SO alone!
Deborah

[Author]

Posts