My Mom has MDS RAEB-2

[Sandra T]

I've known my mom has MDS since before Christmas, when we took her in to the doctor because of her short term member loss, which we thought was the early stages of alzheimers. They did a blood test and her platelet count was in the 20s. She was referred immediately to a hematologist and he tried her on prednisone but it didn't have the desired effect. She was then referred to an oncologist early this year, who started with red blood cell and platelet transfusions. She is now 85 and before this had no real health issues.

Her blood was tested weekly and at first her transfusions were about every 3 weeks. This increased in frequency to about every two weeks. They would transfuse if her hemaglobal dropped to 85 or below and if her platelets dropped down to 12. After transfusions they would rise up to 105 and 30, respectively.

Two weeks ago, she became really weak and couldn't get out of bed, get to the bathroom but she could feed herself. However, her appetite has been really waning over the last few months. My dad couldn't help her at home as he has his own health problems, so she was taken to hospital.

While in hospital, she has daily blood tests and much more frequent transfusions. She is also receiving oxygen. They still bring up her counts to the same levels, but are only lasting days rather than weeks. Her most recent transfusion was on Monday. She also had an infection, which they treated with antibiotics and finally pronounced her clear of it two days ago, on Wednesday. That day she said she felt the best she's felt in ages. They removed the IV and even said her blood counts were stabilized (105 hemaglobin and 30 platelets). The nurses had her up out of the hospital bed and taking a few steps. Then yesterday, Thursday, she took another turn for the worse, her counts are down again at 103 and 16, respectively.

These last two weeks have been a real roller coaster ride, with a lot of ups and downs. The palliative care doctor has told us that as long as the transfusions keep bringing up her blood counts, they are still helping, albeit temporarily, and can be continued until they stop bringing the counts up. But he also said once they are being done as frequently as every 4 days, its basically like pouring water into a pail with no bottom, and that it is akin to inhumane treatment. I think they would like our family to make a decision to stop the transfusions and transfer her to a hospice. The oncologist has basically said nothing else can be done. We are reluctant to stop transfusions, because she has really good days after the transfusions, is not experiencing any pain, is clear and in really good spirits, and her short term memory even improves due to better oxygen circulation. On the bad days she is really tired, her speech isn't as clear and her memory is poor.

Until I found this forum earlier this week, I didn't really have any idea what questions to be asking. I wish I had known about it sooner because maybe we wouldn't be in this situation yet.

I just found out from the hospital today that the type of MDS she is RAEB-2, which from further research seems to be one of the most serious.

I realize she is teminal and there is no clear answer for how long she might live with transfusions or without. I've read quite a few of the posts on this forum trying to find answers on what to expect and what, if any treatments might help improve her remaining quality of life, boost her energy and boost her immune system, but I don't want to raise false hopes if there really aren't any.

I also don't want to give up hope if there is something I've missed that might help. Does anybody have any suggestions, including on how to get her to eat? She really has very little appetite, which in turn is reducing her energy.

Thank you.

[Ruth Cuadra]

Dear Sandra,

I'm sorry to hear about the progress of your mother's MDS, but I'm glad that you've found Marrowforums. You are certainly in a very difficult position given that your mother is so transfusion dependent but is still responsive to transfusions. Those good days when she's feeling better and has more energy are certainly to be treasured now.

MDS RAEB-2 generally has a poor prognosis because the patient is essentially transforming to leukemia. Hospice care focuses on the patient's comfort and quality of life rather than on curing the disease. In this context, I think you could arrange that she continues to receive transfusions because they are restorative and alleviate discomfort/pain. Although it's not easy to stand by when an older person doesn't want to eat, it may be one way in which your mother's body is winding down. Hospice workers can help you understand your mother's nutritional needs at this point and plan a diet that suits her tastes and supports her energy level. I encourage you to visit the Hospice website and speak to the hospital's social worker about services that might be available for your mother's care.

There are many Marrowforums members who have been in your shoes. Every family is different and we can't presume to know what's right for yours, but I hope the collective experience you read about in the forums will help you now. Please don't hesitate to post your questions or just vent here.

Regards,
Ruth

[bebop]

I just went thru this with my Dad. His transfusions finally stopped working so they were stopped. His appetite was horrible and he lost alot of weight. At the time of end of life according to hospice information offer them food and water and if they don't take it try not to force it. It is the body's way of saying enough. Perfectly normal. Trust me though I know how hard that is to realize and deal with. If the transfusions are boosting her I would probably continue for a little longer. From the time they stopped until Dad's passing was 1 day short of a month. He was platelet and rbc dependent. Feel free to ask me anything. I am sorry you too are going thru this. btw Dad was 81

[wilmasdaughter]

Sandra - I am so sorry to hear about your mother's MDS. I am going through a similar story with my 88 year old mother, however, hers is progressing at a much slower rate. As others have said, you have to do what is best for her and for your family. It is so hard to make these types of decisions, and I really am not looking forward to the time when we have to make these decisions for my mother. Just know that you have always, and will continue, to take the very best care of her that you are able.

Please take care and know that we are all thinking of you. Feel free to contact me off-line (via private mssg) if you'd like and I'll provide you with my email address so we can chat further.

[freedom99]

Hi Sandra;
It's a difficult time with so many emotions, questions and decisions. One can easily be overwhelmed with the emotions when one dwells on all details of the situation, what is and what's to come.
Sharing on this forum is one way to talk about it and get some relief. Another way is to have a good friend who you can confide in and who will simply listen.
Refractory anemia with excess blasts I and II. RAEB was divided into *RAEB-I (5-9% blasts) and RAEB-II (10-19%) blasts, which has a poorer prognosis than RAEB-I. Auer rods may be seen in RAEB-II which may be difficult to distinguish from acute myeloid leukemia.(AML)
My wife has moved into RAEB-2 and Acute Myeloid Leukemia.
She is 63, has two platelet transfusions per week. That keeps it at around 15 but does not increase it over a three day period. This most likely means the platelets are not working anymore.
Red Blood cells are transfused two time per month. These are kept at 80 g/l. and do increase by about 20 each transfusion.
In the last month her white cell counts has gone up to 40 x10^9/l and blasts, bands, Auer rods and smudge cells showing up in the blood. This most likely means the onset of AML.
She was put on Hydrea one tablet of 500mg per day to reduce the white blood cells.
The thing is that the transfusions are still working and I will certainly keep that going as long as I can. The doctor did ask me to consider stopping the transfusions but at this point I'm not.
Keep the transfusions going as long as you can. Our level of transfusion for platetlets is 20 and RBC is 80.
I can see that every situation can be so different.
I see that you are getting some great support from the other people on this part of the forum.

[Francisb]

Just found out I have MDS RAEB II diagnosis first of May. Quite a shock, sometimes still can't comprehend it, low platelets were caught in a regular checkup in March. I am 69 and am healthy otherwise only diabetes but that is and has been under control for some time. Spleen is fine. BMB was done and I am now doing blood test once a week for 4 weeks to see if my platelets go down, if they do I will start a low dose chemo. Just learning about this disease, came across this forum and its wonderful. I have some questions about the numbers on my blood test. What does the MPV mean? Last platelet count test was 81,000, MPV 7.4. This week they had went down to 79.000 but MPV was 8.2 and my WBC, RBC and several other numbers had improved. Why did they improve? When people on here talk about their platelets what numbers are they using? I have 19% blasts. If they go to 20% she will do chemo. I am scared but trying to be positive. Reading other peoples stories helps, I don't feel so alone. I hate the fatigue that goes with it. Thank you for listening to me.

[Cheryl C]

Many of us on this forum can empathise with you. I had never heard of MDS when diagnosed and it certainly is a big shock.

MPV stands for mean platelet volume. When the MPV is high and platelets are low it means the bone marrow is producing platelets and releasing them into circulation rapidly. This website might be helpful: http://labtestsonline.org/understand...telet/tab/faq/

All the best, and keep posting!

[Francisb]

When you say they are releasing platelets rapidly, is this good or bad? I just don't know much about all this yet. This forum is so much help. I went to the link and it was helpful.
Thank you

[Neil Cuadra]

Francisb,

As I understand it, having a high MPV and a low platelet count indicates that a large percentage your platelets are new (recently released from the bone marrow). That implies that they aren't lasting long enough. These counts are useful to make a diagnosis, but since you already have a diagnosis I think what's important is to decide how your high-risk MDS should be treated.

I should also point out that diabetes is associated with a higher MPV, and that may in part explain your results. See this research report, for example.

Of the counts you mention, I think your blast count is the most important one. Medical researchers have drawn an arbitrary line at 20% blasts for classification and statistical purposes, but there's really little difference between 19% and 20% blasts. Treatment may be warranted either way. So the blast count found in your next bone marrow biopsy will be important, to find out what direction your blast count is headed.

I suggest that you request the MDS information packet from the Aplastic Anemia & MDS International Foundation, and that you check out the Bone Marrow Handbook and Frequently Asked Questions at the MDS Foundation website.

[bailie]

Francisb,
Has anyone mentioned Vidaza in your conversations with the doctors. When my blast count was at 10-19 percent they put me on Vidaza and immediately started looking for a donor for a stem cell transplant. Looking back, I really appreciate how fast my doctors became active. My numbers were deteriorating rapidly. By starting treatment while feeling well made a real difference for me.

[Francisb]

Thank you Neil & Bailie for your response. So much to learn about this. I think it is splitting hairs also on the 19% to 20% blast. I will go June the 3rd for another blood test and then the 10th to see my Dr. again. I am sure I will learn my fate then. I do trust her, as sadly she was my sister (colon cancer) and niece's (colon cancer) Dr. They both passed away, she is currently my sister-in-laws Dr. I also lost another sister (uterine cancer) & a brother with cancer(lived only 3 weeks, not sure where it started). The word cancer terrifies me. She doesn't sugar coat anything. Other than saying if my counts go down she would start a low dose chemo. I guess I was in shock when she gave me the results, couldn't think of anything to ask her. She said something about not using Procrit, but can't remember what she said. She did say I was too old for a transplant. I am trying to stay positive and I am thankful for getting to live as long as I have. Planning on many more years. Thank you for listening to me, it is a relief to talk to the people on here who understands what I am going through, although I have a great support system. I am trying not to make them miserable, but I still at times can't quit crying. I appreciate your help.

[bailie]

Francisb,

You said, " She did say I was too old for a transplant."

I don't think your doctor is very well informed unless there are other problems you haven't presented. Age 69 in itself is not too old for a transplant.

[Neil Cuadra]

Francisb,

Do you have a family member or close friend who can go to your appointments with you? It really helps to have someone there to take notes while you listen and ask questions.

It also helps if you write down your initial list of questions ahead of time, and bring them along. You obviously know this doctor quite well, but too many times a doctor is keeping a tight schedule and patients who can't remember their questions or keep track of the answers end up learning much less than they could.

When you have a treatment recommendation to consider, here is a sample list of possible questions.

[PaulS]

Hi Franscib - I understand your fear - especially with so many family members stricken with cancer - try not to let the fear overwhelm you - there is plenty of reason to remain hopeful.
The doctor you describe sounds like a general oncologist, not a specialist in blood/marrow disorders - if you can, I suggest you find a hematologist/oncologist specializing in MDS - if possible, try and get a second opinion at an MDS center of excellence http://www.mds-foundation.org/mds-ce...of-excellence/

When they did the BMB did they also do cytogenetic studies to see if there were genetic mutations? if not they should have - some mutations impact prognosis and treatment options.

Don't know what she meant by low dose chemo - the frontline drugs in treating MDS are Vidaza and Dacogen - they both act similarly on the disease and can put some people in remission or at least improve their blood counts. These drugs are not a cure but can work for a period of years - or can be used to put you in remission in preparation for a bone marrow or stem cell transplant. -- transplants can be curative and you age alone should not disqualify you - there are different types of transplants. There is another drug, Revlimid that is used in MDS the is very effective for a specific type of mutation - there are also studies using it alone or in combination with Vidaza in patients without the mutation.

MDS is somewhat rare and, if possible, its important to find a doctor who has experience with the disorder and access to the latest information and treatment options.

Stay positive and enjoy everyday as best you can -
Paul

[Francisb]

I want to thank you all for taking the time to answer my questions. I downloaded the questions to ask my Dr. at next appointment. I went back and read the paper she gave me again and it says FISH & cytogenetic studies are pending and will be reported separately. Every time I read something on here, I go back and look at the paper and it is making more sense. I am much better today mentally, everyone on here has a never give up attitude. I have been encouraged by this forum. I will let you know when I meet with my DR. and what my plans will be.

[Francisb]

I wanted to let you know how my visit went last appointment. I made a list of questions to ask and my daughter also went. I did find out I don't have any chromosome defects. I now have to go in once a month for three months, (unless I get sick and to come in immediately) she says since I was at 55,000 when I come in April and last count was 65,00 that it hasn't went down that much. They have went up as high as 88,000. She will give me Vidaza when needed. She said my WBC wasn't so low that I would start getting infections. RBC are 3.70, WBC 3.6, HGB 11.6, She gave me a copy of her paper that showed some things that are not on my blood work papers. Neut% showed 35.7 on last blood test. I see these posted on here, is this a good number? Didn't get the one the 10th.
I am still feeling good other than the fatigue, which I HATE, I have always been active and did things for myself, but am trying to come to grips with it. Doing much better mentally. She is a Hematologist/Oncologist and another Dr. at the facility are Cancers Specialist. She is very open to any questions and will give you a definite answer one way or the other. I didn't ask anything about a transplant. This forum is so helpful.

[Neil Cuadra]

Francisb,

It sounds like you had a good appointment. I'm sorry the fatigue is still a problem.

You asked about your neutrophil percentage. You can use the ANC Calculator and fill in the numbers from your blood tests and white count analysis. I just put in your numbers and it ranks you as "mild neutropenia", which means you have a small risk of infection, but better than having moderate neutropenia or severe neutropenia. I think it would be worthwhile to take a few precautions, like avoiding sick people and having somebody else change the cat litter box, but that you have a good chance to avoid infections, as the doctor said.

Your test results may include other measures, like your eosinophil percentage and basophil percentage. You can read about what they mean on the ANC Calculator page.

[Francisb]

Thought I would check in and let you know I will be starting Vidaza as my platelets keep going down. Last count was 48,000. I will meet with her Aug 5th to learn the details. First thing I will ask is if it has went to Leukemia. I seem to be more tired than usual. Are there other questions I need to be asking? It puts a kink in me trying to work. Don't know if it will work out or not if not I will accept it. I work around little ones so know there is more of a chance getting infections. I hate having to make this decision, I have always worked. Grrr Just working this week was good for me. I have another question for those on here, my twin brother's daughter has aplastic anemia, about 2 yrs ago she had a BMB, she had transfusions and seemed to be ok, went to the Dr. last week and the Dr. said it should not be where it was, she was surprised but really my question is on heredity, do you think there is a connection? I was under the impression these disease's weren't heredity. She asked her if anyone else had this in her family, I know mine is different than hers. Thank you all, I always feel better when I read posts on here.

[rar]

I had MDS RAEB2. A year ago at age 73 I had a SCT. Last BMB showed 100% donor cells. Age 69 in reasonable health should be good for a transplant. 85 in poor health maybe not.

On my way to recovery I had GVHD that destroyed the gut lining, c.diff and CMV. I was in hospital for 2 months. For the first 6 weeks I was on IV fluids and did not eat or drink anything. I was never hungry or thirsty, no real discomfort. My weight did go from 170 to 130 and had definite malnutrition. Hair fell out but is now as thick as ever, muscle wasted away. I now can hike 5 miles on a good day. People live for months without eating. I was offered food but it was not forced on me.

I was put on IV feed and went home that way and stayed on IV feed for a month and a half. They tried the nose feed. I hated that tube and said I would drink the stuff but take that tube out. It was not a fun experience but I had no real pain except for the middle of the night "vitals".

I was taken off the transplant drugs and promptly broke out in moderate GVHD of the skin. They put me back on 8 drugs that includes 80mg. prednisone. I am making slow progress.

Sometimes I wonder who suffers more, the patient or the care giver.

I wish you all well.

Ray

[bailie]

Ray, each time you explain your adventure I feel like I need to stand at attention and salute you.

Have you, or anyone, heard from Dan lately? It has been about a month since he has posted.

[Francisb]

Thank you Ray, that gives me more hope that there is one more option. I am in good shape for my age. Bailee had said also I am not to old for a transplant. I pray this Vidaza works. Thank you

[Francisb]

Well, I need your shoulders to cry on today. I have known since July 15 I was going to have to have chemo, but because my white blood cells are going down, she doesn't want me around little kids, and that's part of my job. I wasn't facing the white cell issue but it was in the back of my mind. I had been trying to make up my mind what to do. She didn't tell me anything today that I didn't know but had my self believing I was going to get to go to work and everything was going to be ok. Just a big let down but I know I have to take care of myself. And I will get back up!!! I will take a Vidaza shot 5 days a week and be off 3 weeks. Sure hope it works. I feel like I am on a roller coaster and can't get off. Maybe not working will take a load off me. Enough feeling sorry for myself. Thanks for listening.

[Cheryl C]

If you look after yourself for the next 3 weeks you might be back at work. 1000 mg a day of Echinacea could maybe help your white cells not to drop as low - might be worth asking your haematologist if it's ok to take it along with the vidaza treatment.

[traceyn11]

Originally Posted by Francisb

Well, I need your shoulders to cry on today. I have known since July 15 I was going to have to have chemo, but because my white blood cells are going down, she doesn't want me around little kids, and that's part of my job. I wasn't facing the white cell issue but it was in the back of my mind. I had been trying to make up my mind what to do. She didn't tell me anything today that I didn't know but had my self believing I was going to get to go to work and everything was going to be ok. Just a big let down but I know I have to take care of myself. And I will get back up!!! I will take a Vidaza shot 5 days a week and be off 3 weeks. Sure hope it works. I feel like I am on a roller coaster and can't get off. Maybe not working will take a load off me. Enough feeling sorry for myself. Thanks for listening.

Hi Francis - I know how you feel. I have been on short term disability for 2 months due to getting colitis and then a fungal infection because of my low neutrophil count. I loved my job so I hated not being able to work. Yes you do have to take care of yourself and yes you will get back up!

Also, if they give you Zofran for nausea while you are on Vidaza - watch out for constipation.

Good luck!

[Francisb]

After 2 days of Vidaza shot, I had a nose bleed, call the Dr. and they did a blood count before giving me a 3rd shot. My platelets come up from 48,000 to 51,000, my WBC from 2.6 to 4.3, gran 24.4 to 58.0, lymph down from 70.4 to 37.8. Hope I am not getting my hopes up to high. But I am encouraged. What do you think? Had to give shot today in stomach. Had one in each arm, having red stuff around the injection site, might have to go to intravenous injections. Today was my last day at work, sad day but seeing I really need to be away from all the stress and take care of myself.