Multiple Myeloma and now MDS

[Monna Hendricks]

I was diagnosed with MM and had a stem cell transplant 8/2012. I have been in remission until 12/2015 and now have been diagnosed with MDS. My doctor is gathering information about treatment for both cancers. Has anyone else experienced these two cancers and if so what treatment did your doctor suggest? I’ve had two transfusions and stopped taking Revelmid for the MM. I see my doctor in January, but if he doesn’t have some plan for treatment, I’m going to find another doctor. I live in Pensacola, FL and the specialist listed on this site is in Jacksonville, FL about 6 hours away. Any comments you have would be appreciated. Thank you.

[LeAnn Duke]

Monna, I am 58 W/female. I haven’t had MM but I have MDS. and am trnsfusion dependent as of now. My doctor tried me on the Aranesp/Erythropoietin injections to see if they would encourage new Red blood cell production but they didn’t work. My doctor recently made the suggestion of Revlimid in the event that my WBC and platelets become involved. Right now I am low risk with just my RBCs involved. My stage right now is called refractory anemiia with ringed sideroblasts. Basically that means that the ones that are prodoced are not living to maturity. and the ones that do live are abnormal in size and shape and have rings of iron around them. My iron level is high and with transfusions will get higher and I will then have to do what is called iron chelation to pull the excess iron off my body. The reason I am responding is that my dr recently suggested Revlimid as a treatment for my type of MDS. It isn’t the normal treatment but he said it has helped in some situations, Does your Dr. think the Revlimid has contributed to your newly condition. I have heard that Revlimid can bring about secondary cancers and also that MDS can begin with those who have already had chemo or radiation. So there may not be a difinitive answer.

The reason I ask that is my brother-in-law has MM and had a stem cell transplant in Dec. 2011 and it has been in remission now for 4 years. He had it done in Tampa at Moffitt Cancer Center. I don’t know of their work with MDS or whether they have many who go there. I know Pensacola is a long way from Tamp, but I know that he and my sister speak very highly of that hospital.

I hope you get some swift answers from your doctor and that they can help with the best treatment out there. I am here if you need someone to talk to!!

[Monna Hendricks]

LeAnn thanks for your reply and offered support. I was in stage III MM when I was diagnosed. For over 10 years my primary care physician would say, there is something wrong with your blood tests. I had a ruptured ulcer in 2009 and the doctor said, there is something wrong with your blood work. I finally changed doctors and as soon as she saw the blood test results she sent me to the cancer center. I started chemo 2/2012 and finished at the end of May 2012. I left FL and went home to West Virginia University and joined a clinical trial to determine the best treatment for MM after transplant. At that time I had no cancer in my bone marrow. I had the transplant in August 2012. My draw in the clinical trial was the transplant with my own stem cells, 4 rounds of chemo and the 10 mg Revlimid. I moved back to FL in May 2013, and the doctor here kept me on the Revlimid everyday until I started having difficulty walking. He then cut the Revlimid back to 10 mg for 28 days a month. I was in remission until recently. My blood and urine tests looked good. Of course my RBC was always low, and my platelet count jumped up and down. The doctor said it was the Revlimid that made the results change. In November I began having trouble breathing and after the blood test I had two transfusions. My hemoglobin was so low I wasn’t getting any oxygen. My platelet count was really low. I’m covered with bruises. I stopped taking the Revlimid after taking it for 3 1/2 years. The transplant doctor in WV told me that Revlimid could cause other cancers and my doctor in FL said the same thing. The transplant doctor in WV recommended that I take the Revlimid for two years and my doctor here in Pensacola kept me on the Revlimid until recently. I really don’t think the doctor knows if the Revlimid made me have MDS. I didn’t feel like he really knew what to do next. I think that medicine affects everybody differently. I’ve stayed in contact with others that were in the clinical trial with me in WV, and they have all relapsed, gone off the Revlimid and have been moved on to other experimental medications. I do know my feet and legs feel better. Not numb anymore and I can walk much better since I stopped the Revlimid. The pain in my bones has returned and I wash my hands 100 times a day, don’t eat out or go around people that are ill. My concern since the transplant has been to remain as healthy as I can be. Everything I eat has to be fully cooked and I only eat fruit that has been washed with soap and peeled. I don’t eat raw seafood or eggs that are not cooked like soft boiled. I hope I’ve helped with your question. Cancer is a full time job, but I’m thankful that right now it’s not worse. Good luck and keep in touch. I’ll post what happens with the next step in my treatment. Monna

[LeAnn Duke]

Hi Monna,
Thank you for sharing your experiences. I am very interested in what others are experiencing because I have yet to find anyone with exactly what I have. I am curious to hear what others are dealing with and to see if they have information that I haven’t found yet. I am sorry that you are having pain in your bones. Is that due to the MM or something new since the MDS diagnosis? Has your doctor told you what stage your MDS is at? Are your WBC involves? It sound as if your platelets may be involved since you are bruising so easily. Do you experience heart palpitations as well as the trouble breathing? When my levels drop I get the heavy heart beating, shortness of breath, and heaviness in my arms and legs and general fatigue. I haven’t had any other symptoms, but basically when the hemoglobin drops I don’t feel like doing anything. Of course the blood helps but the more transfusions I have the higher my iron level will climb and from what I read that can bring on achy joints as well as what I mentioned in the previous post. I guess in all of this I am learning patience to deal with not being able to do the things I have always enjoyed doing. This year I really don’t feel like even putting up our Christmas tree!! I will of course but it’s just harder this year.

I guess that Revlimid can work better on some than others kidn of like Aranesp does. It works for some and not at all for others. My sister told me the Drs at Moffitt in Tampa said my brother-in-law was the poster child for MM. He had the transplant using his own stem cells and left the hospital after 15 days and went to the close by apartment and left there after about 10 days and was able to go home. From what I hear that is almost unheard of. I know they told him there was really no cure for MM and that they could “put it to sleep” but eventually it would wake up. My Dr has also told me that there is no cure for MDS either and that they can treat some with the transfusions, injections, a drug called Vidaza that can tend to help produce more RBCs and then eventually the stem cell transplant. But he reminds me that is not necessarily a cure but more a treatment and eventually it comes back.

I have a twin sister who will be my donor when that time comes, of course if something else doesn’t happen in the meantime. I realize that we are only promised today and that tomorrow may not come, so I live one day at a time and pray that when that time comes that she is still healthy and can donate.

I am due for another transfusion but my hemoglobin level is dropping slower than what I have come to know as normal. I am about to change my mind and come to the conclusion there may not be a normal with MDS. My hemoglobin was only down to 8 today so I will probably wait till first of next week. I have never been 6 weeks before a transfusion since I was diagnosed in June. The norm was 3 1/2 to 4 weeks.

I haven’t had any problems with eating any particular foods at this point. I have had trouble sometimes having an appetite and finding anything that sounds good to eat. Certain foods just don’t have an appeal to me anymore. But I am staying the same weight so I guess I’m doing ok. Can eat pretty much what I want.

Don’t feel pressured to answer quickly. I know somedays I can’t think of what I want to say and don’t necessarily feel like typing. Best of luck and I will keep you in my prayers.
LeAnn

[donna kauffman]

I was diagnosed with MDS about two years ago. My oncologist put me Jakifi which helped for a year and kept the white cells down somewhat. I was even able to go back to work for over a year. I recently had a pulmonary emobolism which had me in the hospital for 6 days. They kept me on the Jakifi and added Hydroxy Urea which brought my WBC count to the lowest it has been in two years. I began having excruciating head, neck, jaw and ear pain. They gave me opiates to help and it did nothing to relieve the pain. They gave me a drug called Toradol that was a wonder and really helped. It is basically a liquid motrin and can only get it intravenously.
Like most of you the fatigue and inability to be who you are is the worst part. Going up and down steps is really difficult. Unfortunately, my WBC are not over 102 and my fatigue is over the top. We are now talking to the transplant team for a bone marrow transplant. Of course there are no guarantees.

[LeAnn Duke]

Hi Donna,
What is the stage of your MDS? Low risk, intermediate or high risk? I had never heard of the drug Jafiki until you mentioned it. I’m sorry you are having such problems. Do they seem to be related to the chemo or something else? I have basically been healthy all my life until now so I don’t know anything about the most recent chemo drugs. The only one I am familiar with is Revlimid because my brother in law took that for his multiple myeloma, before and after his transplant.

The fatigue is quite depressing when it hits because many times I can’t get off the couch. But I will say over the past few months I haven’t had it as bad as I did at first. I am still tired and struggle with walking very far without being short of breath and when my levels begin to fall as the transfusions wear off I have the heart palpitations but the general feeling of crud that I had early on is not something I experience all the time.

I understand about the transplant and there being no guarantees. It is a very difficult pill to swallow knowing that this is not curable and that the transplant is the only thing that can possibly give us any chance at survival. Do you have a sibling to donate or would you have to go through the transplant registry?

Stay in touch Donna and let me know how things are going and when your transplant will be. God bless and I hope you have a very Merry Christmas!

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