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MDS and me. What now?

dcal2u
2 Recommendations

I was just diagnosed 2 weeks ago with MDS. I can't find anyone else who has this particular disease so here I am. I haven't started chemo yet and am worried about the after affects. My doc. says it is a low dose and I should have little but I find they always minimize the affects of things :-) My bone marrow test was horrible! He promised next time he would give me something stronger for it.
I'll come back and post when I know more and would appreciate anyone else posting here that has this. You can even email me directly if you choose.
I'm glad I found this site. I have read others and it gives me some strength. Right now it is new and I am scared.

Explore topics in this discussion:

Cancer Bone marrow transplant Pneumonia Anxiety Chemotherapy Prednisone Fibromyalgia Sweet's syndrome Lenalidomide Myelofibrosis Revlimid Polycythemia vera Folic acid Stress Pulmonary fibrosis Leukemia Stem cell transplant Fever Anemia Breast cancer Pain Depression

51 replies

wolfmother

HELLO, I WAS DIAGNOSED WITH MDS THREE YEARS AGO AT AGE 62 AND AT THAT TIME I WAS TOLD THAT PEOPLE WITH THIS DISEASE DON'T LIVE LONGER THAN TWO YEARS. I HAD A BONE MARROW TEST WITH NO MEDICATION AT ALL AND WILL ABSOLUTELY NOT HAVE ANOTHER ONE. I WAS TOLD THAT THERE WAS NOTHING THAT COULD BE DONE FOR ME AND THAT I SHOULD GO AND LIVE MY LIFE TO THE FULLEST. IT IS A VERY FRIGHTENING THING AND I KEEP WAITING FOR THE "AXE TO FALL." THE DOCTOR TELLS ME NOTHING THAT HELPS. I HAVE HAD NO TREATMENT OF ANY KIND OTHER THAN A BLOOD TEST EVERY FOUR MONTHS AND THE RESULTS ARE STABLE. I AM CURIOUS AS TO WHAT THIS "PORT" IS THAT YOU REFER TO AND WHY YOUR DOCTOR HAS RECOMMENDED CHEMOTHERAPY. I WOULD LOVE TO HEAR FROM YOU AS YOU ARE THE FIRST PERSON ON THIS SITE WHO HAS THIS DISEASE. THANK YOU AND I WISH YOU WELL.

dcal2u

Hi and thanks for replying. I am 63. I just found out I am getting my chemo starting Monday. I will have it for 5 days then 28 days wait and start again. I'll get "decitabine" He will also give me "erythropoietin" once a month for the immediate relief of symtoms and help the good cells. I have the "cronic" kind in a mild form and my doctor didn't say anything about getting my life together. The usual is 20% bad cells and I only have 7% so I guess I caught it early and my diagnosis is "mild". I have read nothing else good about it and remission is maybe 12 months if it works. I don't know if that is 12 months one time, or at a time. I have to talk to my doctor again. I will get regular blood tests to check my progress. Nothing else I've read sounds very good. it sounds like I will end up with full blown leukemia at some point. I'm praying for the best. Have you thought about changing doctors? Where do you live? Maybe you could ask about the chemo treatment? Mine is a mild form (he says) and I should not get too much after affects. Tingling, nausea and he will give me pills for that. However, everyone is different and I am the epitomy of "murphy's law" :-). I'm just trying to keep positive and I hope you are too. I want at least 10 more years! Are you getting support at home? Please keep in touch. I know no one else that has this either.

dcal2u

Oh yes, and the port is something they implanted in me for the injections so they don't have to use all my vains. The "drip" of chemo takes about an hour.

dcal2u

I have questions if you can answer. did she ever go into remission? If so, for how long? Does she still get any chemo or an occassional bone marrow test? Thank you for responding. John Hopkins is an excellent facility! I'm going to a new cancer center here and so far it is very nice.

gpawelski

Is going on with life for 25 years considered remission? Although she has polycythemia vera and myelofibrosis, it is in the myeloproliferative disease category. She has heard that many hematologists do not have too many cases in this field and do confer with the doctors at Johns Hopkins for confirmation. If you have any interest in Johns Hopkins, the people to see are Dr. Alison Moliterno, an associate of the head of the department, and Dr. Jerry Spivek.

She has heard of many people who are/were on Revlimid (lenalidomide). So far they are doing great. Although it can be of great significance, complete remissions with Revlimid are infrequent and very with specific subsets of patients (those with alterations of chromosome). Revlimid appears to stop endothelial cells from forming new blood vessels.

My brother-in-law was inflicted with MDS this past year at 72. It was more than likely caused by the irridium wires (radiation) placed in his prostate the year before. I know there was that risk with chemo. I was reminded with some research that radiation is a culprit also. He is existing on plenty of blood transfusions and some procrit. However, he is being treated at our local community hospital (the same hospital that did in his sister).

The Leukemia and Lymphoma Society nationwide will send up to $500 a year to help pay for transportation, drugs, transfusions, etc. There is no other criteria except a form the local Society would send you, filled out to indicate the doctor's signature, diagnosis and date of service. Another form would include the drug(s) you are taking, mileage, etc.

Although no one diagnosed with myelodysplastic syndrome has cancer, the Leukemia Society includes them in their program. She has been getting this help for years and it does help some. The transportation does include air or train, as well as vehicle mileage. When she went to NYC for a consult with Dr. Richard Silver, it did pay for her train fare (but not spouse).

GIL

Hi Dcal,

I am sorry that you have this disease. Please be aware that there are many drugs that are being worked on to treat MDS.
I was diagnosed with MDS in Sept. 2006. I started treatment one month ago at Mt. Sinai Hospital in NY.
I have been very lucky because I have not had any side effects from the drug, I hope you do not have any problems either. I am very surprised that you are starting treatment so quickly. Please look at the MDS foundation website www.mds-foundation.org/ it is very informative.
Good luck
Gil

wolfmother

Thank you for responding so quickly. I am going to print out these responses (without names of course) and show them to my doctor when I go for my next blood test. He has not recommended chemo and actually said it would not help me at all. We even have my grandsons cord blood and he said that wouldn't help either. I do know that there are drugs such as the one mentioned in one of the responses (Revlimid) but the doctor told me that would be for later on when I get other symptoms, symptons that he has never described. I am not sure what stage I am at but I have anemia now - low red and white cells, low hemoglobin and low platelets. I am very tired all the time and now when I get a simple thing like a cold it lasts a long time and one cold turned into a sinus infection and I had to be on antibiotics for a month. Everything I have read indicates that I will get leukemia at some point in time. I think that is what the doctor is waiting for. I went for a second opinion and got the same results so I feel changing doctors is pointless. I do try to be optimistic and live each day as best I can. I too would love to be here for many more years. I pray for more time and am thankful for each day that nothing changes. I have my husband, three children (a daughter and two sons) and two grandsons. My grandsons keep me from really falling into the pit of depression. My husband and children are, naturally, in denial, each in their own way. I have three sisters who are supportive and I can talk to them but of course it is hard for them also. A few of my friends know that I have this disease and are supportive also.

I live in Staten Island, New York and am a retired school secretary. I too love mysteries. Do you have a favorite author?

Again, thanks for answering. Good luck with your chemo. Let me know how it goes for you.

dcal2u

Gil,
I went to the website. Everything has gone so fast and I don't understand a lot of the info. Is there a reason you feel my treatment is so quick? I am at 7%, which is low, but maybe things are being rushed? I sure don't want treatment if I don't need it. I'm glad things are working for you. I hope it continues.

gpawelski

Myelofibrosis can be (but is not invariably) a form of pre-leukemia. In cell culture analysis, they need to test the actual leukemia cells, which are called "blast" cells. The problem is that there needs to be at least 10% "blast" cells in the bone marrow or peripheral blood for them to do the testing. It is relatively uncommon that a patient presents with myelofibrosis and also excess "blast" cells. Often in myelofibrosis, you get a "dry tap" which provides no cells at all. This is perhaps why it is difficult to treat it with chemo drugs.

dcal2u

Is myelofibrosis the same as Myelodysplastic syndrome? I am so confused and being the weekend I can't talk to my doctor. I will have to wait until tomorrow when I go in for my treatment!

wolfmother

I am pretty sure the difference between myelofibrosis and myelodysplastic syndrome is abnormal production of "blood producing stem cells" as opposed to abnormal blood cells having been produced by normal "blood producing stem cells." Blood producing stem cells are what is created by your bone marrow. Let me know what your doctor tells you after you speak to him tomorrow.

dcal2u

yes I will. I have a few questions, and on the day of my first chemo treatment!!!

gpawelski

Myelofibrosis is in the myeloproliferative disease category

GIL

Hi,
Two weeks is a very short time to get results for a bone marrow biopsy, I have had 4 bone marrow biopsies and it took at least three weeks to get the complete results each time. I do not mean to question your doctors or your decision but a second opinion is a good idea before starting chemotherapy. I do not know where you live but the MDS Foundaion website has a list of treatment centers and doctors that they recommend who specalize in this desease.
Good luck
Gil

mmosier

Hello everyone....This is Michelle and I am 41yrs old. I was diagnosed with MDS in November and sent to Mayo. I have been there 3 times for several tests. I have had one local bone marrow biopsy and 3 at Mayo. We tried Revlamid although it made all the other numbers look great - took my blasts from a 10 to a 3 it didn't touch my chromes - i have the deletion 5q. At this point we have found a 100% match and I am scheduled to be at Mayo on the 13th for more tests and blood work. Monday I will start a prescription, Tuesday they will put in the Hickman catheter and Wednesday we start the High Dose Chemo and Radiation. Stem Cell Transplant is set for the 26th. I have been told that the transplant is the only cure, without it the MDS will turn to lukemia quickly. From looking at blood work for a few yrs ago it has slowly progressing all this time. I had no signs of being sick what so ever!! In October I had a sinus infection but then my lower legs got some red spots on the "patacia" I went back to the Dr and after he did a CBC he said I was anemic (no surprise). He gave me a B12 shot and folic acid. After the next CBC he told me I had him perplexed and he set me up to see a Hemotologist. After the 1st biopsy results he referred me to Mayo in Rochester. My life has been a roller coaster since.
After the transplant I will be in the hospital until engrafment a few weeks, then I have to stay in Rochester for at least 100 days at a transplant house. I have put my trust in my Dr. The whole process will take approx one yr to return to normal. I have a daughter Emma 11 and a Son Nathan 9. While there I must have a caregiver with me the entire time, my sister and mother are going to share this responsibility. Any who, its nice to finally talk to someone else who has the same situation.

GIL

Hi Dcal,

How did your first treatment go?
I hope you are feeling okay.
Gil

dcal2u

Thank you for asking. It went fine and the nurses were wonderful! They asnwered all my questions too. I am having a low dose so, so far, I've had no affects. I will get tired tho'. As soon as my insurance ok's it, I will be getting the drug to help build up my cells too.

Rock44

Thank you dcal! The worst thing about chemo is that friggin port! I hate having that in be/c it's a constant reminder. But don't be afraid of the chemo! You'll normally be in a room full of fighters and its not that bad. Sure a few side effects that can be uncomfortable, but hang in there!

dcal2u

I've been very lucky, so far. I went through my first week of chemo and don't got back until the 30th. I also get a shot every 2 weeks to help out the good cells. Other than being tired, I have had no side affects. The doc told me I won't loose my hair either so that is a plus :-) I'm the epitomy of "murphy's Law" tho' so we will see! LOL

chemo1

Hey Dcal hope all is still going well, along with all the other things you are trying to conquer don't be afraid to ask for medication to help control your anxiety! I was halfway through my battle when I went on medication to help cantrol anxiety and depression brought on by all that we have to go through! At first I was concerned, "what me depressed" you have to be kidding! But it was the best thing I had done for myself. Cancer feeds off of stress, fear, anxiety ect. Best wishes and PEACE!

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