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MDS Myelodysplastic syndromes

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  #1  
Old Thu Aug 6, 2015, 05:46 PM
Maura R Maura R is offline
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Angry My mom was diagnosed today with MDS

Hi everyone,

Looking for some help here!! My mom was diagnosed with MDS today and from what the doctor told us, I'm blown away...the news was not good. I've done alot of reading on this disease, but have never seen anything that said it's terminal. I was basically told today, if we don't do any treatmenet, my mom will pass in 6 months...and with treatment, (1 pill a day for 5 days, once a month or 1 pill a day for 21 days.) and 2 visits to the doctor's a week for blood level check and blood transfusions. With this treatment, the doctor said my mom will have at least 1-2 years.
When asked what the side effects were, she really wouldn't commit to anything, so I'm asking anyone out there...what are we really up against here? How bad is the treatment going to be for my mom. I want her here with me, but I don't want her last few years left to be in pain or discomfort. Please help me understand what is happening...thank you so much!!!
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  #2  
Old Thu Aug 6, 2015, 06:08 PM
bailie bailie is offline
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I am sorry for your Mom's diagnosis, it is a real life changing shocker. The doctor was being very candid and that should be appreciated. They are in a difficult position when talking "time" because everyone is different. I had an acquaintance a few months ago who only lived about a month following diagnosis. Some people on this forum have lived for years. There are varying situations with MDS so learn the particulars of your Mom's diagnosis i.e. "blast count", platelet count, white cell count etc. Knowledge about the disease is very helpful. The only possible "cure" will be a stem cell transplant, otherwise the disease is "terminal".

What kind of "pill" did the doctor refer? There are different approaches. I was immediately put on Vidaza (subcutaneous shots for a week and then off for 21 days) following diagnosis. It just depends on what the diagnosis is. With the longevity mentioned I would think more than just the "pill" would be appropriate, but the doctor knows what is best. Most people tolerate the treatments well.

Age makes a difference with types of treatment also (the younger, the better). We aren't doctors on this forum, but we have a wealth of experience. So ask many questions and try to be as specific as possible with names and numbers.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #3  
Old Thu Aug 6, 2015, 07:06 PM
Maura R Maura R is offline
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Angry Ballie

Thanks so much for the information. My mom just turned 81 this past June. We wouldn't of even known that she had this if she hadn't fallen when trying to catch my dad from falling who has Parkinson's. They did a blood test because her hip swelled to the size of a watermelon, platleete numbers down to 15,000, she had 2 transfusions while in the hospital and they did a bone marrow bioposy.

The doctor didn't say what kind of medicine yet, just told us the particulars..took more blood tests to see what her numbers are and we go back next week for results. We have to give the doctor an answer then if we want to do treatment or not. How bad does this medication affect you, and what can we expect if you know.
I'm so glad I found this forum to help with certain decisions that are coming up and to just know that we are not alone. Thanks again
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  #4  
Old Thu Aug 6, 2015, 07:14 PM
bailie bailie is offline
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What is the name of "this medication"? Remember different people react differently to medication. What specifically was your Mom's diagnosis?
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #5  
Old Thu Aug 6, 2015, 07:30 PM
Neil Cuadra Neil Cuadra is offline
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Maura,

The medicine that the doctor referred to might be Revlimid (also called lenalidomide), which is often effective for a subtype of MDS in which part of chromosome 5 is found to be missing. Some people experience unpleasant side effects of Revlimid, including, ironically, low blood counts. There are risks of blood clots, liver issues, and more, but doctors may still recommend it when the risks of going untreated outweigh the risks from the drug. Different people tolerate drugs differently, so you can't predict which symptoms will actually be a problem for a given patient.

However, don't assume this is the treatment you've been told about. Find out. Also ask about your mom's MDS "subtype", her blood count numbers, and for an English explanation of the results of any other tests she had.

If your mom's doctor doesn't have experience with MDS, I suggest finding someone with more expertise for a consultation.

The chances for successful drug treatment will be higher if your mom is in great shape for her age and less if she is living with other serious medical conditions (which is common for someone in their 80s).

Once you have more facts, then you'll have a basis for considering the tradeoffs among treatment choices (or no treatment). That includes considering her quality of life.
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  #6  
Old Thu Aug 6, 2015, 07:42 PM
riccd2001 riccd2001 is offline
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Just a guess, "1 pill a day for 21 days." sounds like 5 or 10mg Revlimid as Neil mentioned. That drug has side effects that vary from patient to patient. For me I had to discontinue when my WBCs tanked. You need to get mom's CBC details and keep track of treatment trends. Good luck!
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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  #7  
Old Thu Aug 6, 2015, 08:08 PM
riccd2001 riccd2001 is offline
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Not trying to be negative but...

Not trying to be negative but recently reported in 'Oncology' people do need to balance QOL and treatment RISKS .as EOL approaches


http://www.practiceupdate.com/journa...1&lid=10332481
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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  #8  
Old Thu Aug 6, 2015, 08:31 PM
Maura R Maura R is offline
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Angry

Thanks for the feedback on this. This is so confusing but am learning alot on what I need to ask questions about come next Thursday. Like I said, the doctor was very direct and quick with what to do, with no real help in making the decision. My next question is, should she be seeing an "Oncologist" or is a "Hematologist" ok..who she is seeing now...her top speciality is dealing with AML
Thanks again for all the help.
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  #9  
Old Fri Aug 7, 2015, 08:54 AM
Marlene Marlene is offline
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Also consider getting a second opinion from a doctor who has experience with treating people with MDS. You need to know all the options available.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #10  
Old Fri Aug 7, 2015, 04:39 PM
Maura R Maura R is offline
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riccd2000

Not taking it negative at all...my mom's QOL is our main concern here!!! Will find out on Thursday all the numbers and what treatment plan is, will get back to you then. Thanks for all the support, it is greatly appreciated!!
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  #11  
Old Sat Aug 8, 2015, 11:39 PM
bebop bebop is offline
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ultimately once you find out type of treatment it is up to your mom. My dad decided against anything other than transfusions and made it right at 13 months. Blood and platelets. he was 80 at diagnosis.
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  #12  
Old Sun Aug 9, 2015, 10:13 PM
Maura R Maura R is offline
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bebob

Thanks for your response. Sorry about your dad!! How was his QOL for those 13 months...I know every one handles it differently, but would like to get an idea on what were up against, if you don't mind sharing. Thanks so much!!!

Last edited by Maura R : Sun Aug 9, 2015 at 10:23 PM.
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  #13  
Old Tue Aug 11, 2015, 12:26 PM
bebop bebop is offline
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Maura he did ok for awhile. He was in getting blood and platelets 2 times a week. He got really tired of going so often. I watched him grow weaker it seemed like every week the last few months but his oncologist kept him going until his great granddaughter was born. It was hard on him at that point. I think losing his son/my brother shortly before shortened his life too. He went downhill pretty fast after that. I will be more than happy to share with you. if you want private messages that is ok too. I am sorry you are going thru this with your mom.
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  #14  
Old Thu Aug 13, 2015, 07:58 PM
Maura R Maura R is offline
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My mom was diagnosed today with MDS

Hello everyone, I recently put up a post about my mom being diagnosed with MDS...well today we got the final diagnosis. She has RAEB II with blasts at 15 to 18%.
She is 81 years old, the doctor gave us our options, and we decided to not do the IV therapy..just going to monitor her blood counts from here and blood transfusions when needed. The doctor felt her numbers were somewhat stable at this point so no transfusion this week. She will receive the Nupigen shot on a weekly basis.
Here are her numbers as of today..
WBC 2.9, LVM 1.2,MID 0.8, GRA 0.8, LYM%42.5, MID% 28.2, GRA% 29.3, RBC 3.51, HGB 11.4, HCT 35.1, MCV 100.1 MCH 32.5, MCHC 32.5, RDW13.4,PLT 36
MPV 8.4
One of the hardest decisions of our lives, but we want mom to have QOL.
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  #15  
Old Thu Aug 13, 2015, 11:28 PM
bebop bebop is offline
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I wish you didn't have to go thru this roller coaster.
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  #16  
Old Fri Aug 14, 2015, 08:00 AM
Maura R Maura R is offline
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bebop

Really wishing we didn't have to go through it also...this is one confusing disease!! Just happy that I found this forum to help out with decision making and to have someone to relate to. Thanks so much!!
Maura
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  #17  
Old Sun Aug 16, 2015, 12:01 AM
bebop bebop is offline
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I know that feeling. I felt so alone until I found this place.
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  #18  
Old Sun Aug 16, 2015, 05:08 PM
MarianneS MarianneS is offline
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to Maura R Mom diagnosed with Raeb 2

2013 husband was 79 y o with same diagnosis as your Mom. Really can't say what the blasts were. He had all three blood lines down to rock bottom. Oncologist started on Dacogen and following month switched to Vidaza. He was also getting blood transfusions. After a few months he was having much better quality of life. Please do not assume if your mom receives medication that it will effect QOL....it may be better. There is always the chance that it will not be successful but if you do not try you will not know.

Wishing you all Good Luck!!!
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  #19  
Old Mon Aug 17, 2015, 12:22 AM
Faye R Faye R is offline
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Smile Well done

Making a decision like that is something that I'm dreading but know at some point in time it will have to be made, I'm sure when the time does come my family will be behind me all the way well done you all.
Off to have my bloods done tomorrow keeping fingers crossed that my counts have gone up and they will up the Vidaza
Dx rcmd-ra
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  #20  
Old Wed Aug 26, 2015, 10:34 PM
Maura R Maura R is offline
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MarianneS

Thanks so much for the concern, we went to the doctor's again and they want to do IV therapy 5 times a week every month and knowing my mom she will not be able to withstand that. We are going on a weekly blood count check and getting transfusions if needed. Her numbers this past week were ok, platelets at 23, so will probably need transfusion next week. Doctor will wait till platelets are down to 15 before transfusion.
We, including the doctor's have explained everything to her and this is what she has chosen...along with our help. Their diaganosis is 4 to 6 months, but we are very hopeful that we will get much longer.
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  #21  
Old Thu Aug 27, 2015, 04:55 AM
DanL DanL is offline
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It is really difficult to predict how a patient is going to respond to treatment in terms of quality of life. I have met several people in the past 5 years who have done very well with Vidaza and Dacogen and what seems to be a smaller group of people who have seen a reduction in quality of life that is tied to the treatment. The quality of life differential is usually tied more to progression of the disease as opposed to taking treatment (this is my completely unqualified opinion based on observation and conversation) I have had 10 cycles of Vidaza and really only experienced about 3 days per month where I was a little run down - oddly enough it was during the 3rd week of each treatment cycle. The other consideration is that typically if you are going to get a response from Vidaza or Dacogen, it usually happens within the first 60 days for Dacogen, but can take up to 6 or 9 months to get a best response from Vidaza, meaning that it might be better to get ahead of the disease with treatment.

to sum up - quality of life with the couple of drugs that are most commonly used is not usually affected too much for most patients - that is, unless getting to and from clinic is bad. The drugs used are pretty well targeted and are not systemic, so the impact is generally manageable. Lastly, listen to the doctors, ask questions, and see if you can talk to people who are currently receiving treatment so that you can get a real life narrative.

Best of luck!
Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #22  
Old Thu Aug 27, 2015, 10:58 AM
Maura R Maura R is offline
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DanL

Thanks so much for the reply. When my mom was first diagnosed, they were going to do the medicine which we were on board with, but when we went back to give the final decision as to what treatment we should do, the doctor said that her progression of the disease wouldn't respond to the medicine, so that is when she said they would do the IV therapy for 5 days, every month.
Can the Vidaza and the Dacogen be given in IV therapy or is it in only pill form. The doctor was very concerned about her numbers dropping so low, as they are low now, which is why we decided to just monitor at this point.
Will keep everyone posted on how she does on Monday.
Thanks again,
Maura
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  #23  
Old Thu Aug 27, 2015, 11:59 AM
MarianneS MarianneS is offline
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medicine

Vidaza (IV) takes about 35 minutes give or take. Husband was given Aloxi the first day in the IV which should assure no gastro upsets (but can cause constipation) After the infusion he had very little to no after effects.

Do not know anything about Vidaza in pill form.

Wishing your Mom good luck.
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  #24  
Old Thu Aug 27, 2015, 01:27 PM
DanL DanL is offline
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Maura,

Vidaza is typically done via infusion over about 30 minutes or as injections based on doctor or patient preference. It is generally a good idea to take any anti-nausea medications offered as preventative treatment. I never had any issues with nausea or constipation while on Vidaza. Dacogen I think is done as in-patient infusions and done over a 24 hour period for 3 days - but I am not sure.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #25  
Old Thu Aug 27, 2015, 04:10 PM
riccd2001 riccd2001 is offline
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Celgene's Current Quazar Clinical Trial of Vidaza pill form...

There is a clinical trial in progress called CC-486 (Oral Azacitidine).

"QUAZAR Study for Lower-Risk MDS Patients A clinical research trial sponsored by Celgene Corporation. This is a study for people with MDS who need blood transfusions due to low red blood cell counts (called anemia) and low platelet counts (called thrombocytopenia)."

It's meant for patients with low-risk MDS; however, it may prove helpful also for those with higher blasts.

https://www.celgeneclinicaltrials.com/quazar-mds
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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