New Member/Dad with MDS

[choijk]

Hi Everyone,

I just read through all through all the threads regarding MDS and those who have the condition as well as those whos family members are continually dealing with this disease.

My name is June Choi and I currently live in CA. I just found out last wednesday that my 71 year old dad is diagnosed with MDS. My parents kept it away from me because I was studying for the California Bar Exam and I just found out when I moved back home from San Diego. (I moved back up to LA on Sunday). It has been horrible ever since I found out.

I would like to share my dad's condition thus far, and hopefully someone can share some insight with me? It seems like the doctors are sort of apathetic to all this and I just don't know what to do at this point.

My dad collapsed (fainted) on 01/13/07 and was rushed to the ER. I don't really know any of the medical terms yet but I will share with whatever that I do know at this time. My dad's hemoglobin was around a 6.0 on 01/13/07. He was given a blood transfusion of 3 units. He was also given vitamin B6 and Frolic Acid at that time.

This past Thursday, my dad indicated that he felt nauseous and dizzy. I called the hemotologist at Kaiser and managed to get my dad a earlier appointment for today 03/12/07 instead of the 04/11/07 appointment (nearly 6 weeks later). My dad's blood was drawn and his hemoglobin fell from a 8.8 to a 6.6 as of today. He was given another blood transfusion today of 2 unit and he will be starting Vidaza as of Thursday for 7 x for 5 months. If this fails, Dr. Shar is recommending Revlamid.

I am so scared at this point. I been reading a lot of MDS online and found this website and joined immediately. I am a little relieved because Vidaza has been working on some of the members on this thread. I guess my biggest concern at this time is that the MDS might lead to acute leukemia. Any thoughts on this?

I would also like to get your thoughts on regarding whether or not my dad should be fully informed of his condition. My parents are both first generation Korean and although they do understand and speak English, they have a harder time understanding the medical terms and what the doctor has been informing them. Today was the first time that I accompanied them to the hospital. I explained to my mom everything the doctor told me. However, my mom is hesitant as to whether or not we should tell my dad. We don't want my dad to get the notion in his head that "death may be near." We want him to stay positive and keep a positive outlook. Any thoughts?

Plus my other question is, what is the life expectancy with someone with MDS? (espeically when someone is older and in their 70's?)

Thank you for all the information. I feel like my wolrd has been flipped upside down ever since I received this information. I will be praying for everyone on this thread when I am praying for my dad.

Sincerely,
June Choi

[choijk]

hi anyone near the LA area?

[Ruth Cuadra]

Hi, June.

Welcome to Marrowforums. You're not alone in the fear and confusion you're feeling about your dad's MDS diagnosis. There are many people here who have had the same experience.

Your concern that your dad's MDS might evolve to acute leukemia is reasonable but may be premature. MDS is divided into several categories, only some of which are likely to lead to leukemia. The diagnosis of MDS--and the identification of which subtype your dad has--can only be confirmed through a bone marrow biopsy. Had he had one? What were the results? In particular, you'll want to know if any chromosomal abnormalities were found and, if so, which ones. This information will help identify his subtype and possible prognosis.

It sounds like he has gotten good treatment so far. I'm impressed that the doctor is aware of Vidaza and Revlimid, both of which are important and recent additions to the options for treating MDS. I don't know how it works at Kaiser, but you should be aware that these drugs are very expensive and many times patients have a hard time covering the costs. You should clarify this with Kaiser before your dad starts his treatment.

I understand your family's first reaction to keep the information about MDS from your father to help him keep a positive outlook. Although I was much younger than your dad when I was diagnosed with MDS, I wanted to know everything. Having information about the disease, the treatments, and the possible outcomes helped me feel in control of the decisions about my care. There are certainly people who don't want to know the details, but I think they need to at least know what they are dealing with.

In terms of life expectancy, you should know that MDS affects everyone differently, but the statistics that you will find on the Internet do not really correspond to the experiences of our members. Many people, even when diagnosed in their 60s and 70s, have a good life for years and years.

Lastly, I am also in Los Angeles, so if you'd like to chat by phone or by personal email, please send me a private message.

Regards,
Ruth Cuadra

[Steve Kessler]

I agree with what Ruth said. She has long experience with MDS, so do call her.
I assume your dad is on Medicare part D, so Kaiser should take care of the meds the way they usually do and then, after a $3850 out of pocket expense for these expensive drugs, he will only have to pay 5%. Not great, but usually within most people's means.

As far as survivability goes, since the advent of the two drugs you mentioned as well as Dacogen (a lot like Vidaza), the old poor survivability statistics should be ignored. People are living longer these days. You do need to ask his doc about which chromosomal abnormalities your dad has, as well as excess blast cells. His fainting and low counts are just due his being unaware earlier of how weak he was. He will stabilize with transfusions and you can begin to get some order in your life, as well as his.

There is much info available on the drugs as well as treatment options at the AA-MDS Foundation. Keep posting. We'll try to keep you informed.

[choijk]

Thank you both for all the information. I will definetly will be contacting Dr. Shar and will be requesting which chromosomal abnormalities my dad has and the excess blast cells.

I will definetely continue to keep posting.

Thank you all again for the support!!

[choijk]

I spoke with Dr. Shar today and he told me that my dad does not have any abnormal chromosomes and that he does not have any excess blasts. Can anyone share with me what this may mean?

I think my dad's condition has to do with him not being able to generate red blood cells. However, I am not 100% sure. I will need to get the charts from Dr. Shar in order to see if his other levels are okay.

However, my question is..... would Vidaza be effective for my dad's case? I think I read somewhere that Vidaza is effective in getting rid of abnormal blood cells. How about if there is no abnormal blood cells?

Thank you for all your help.

[choijk]

This is the bone marrow biopsy findings:

Final Diagnosis:

Bone Marrow, Aspirate Smears and Sections:

1. Hypoerceullar marrow (70-80%) with granulocytic hyperplasia and megakaryocytic hyperplasia with dyspoietic changes (see comment).
2. Blasts < 5%
3. Decreased storage iron
4. Flow cytometry: No evidence of monoclonality in B-cell population; no increase in CD34+ immature myeloid cells

Comment:
The findings are suggestive of myelodysplastic/myeloproliferative disease. Correlation with clinical, other laboratory (B12, folate) and cytogentic finding is suggested.

HEMOGRAM:
WCBC, 6.2;
RBC, 3.14
HGB, 9.5 g/dL
Hct, 28.9%
MCV, 92fl
MCH, 30.3pg
MCHC, 32.9g/DL
RDW, 18.4%
PLT , 347
MPV 2.9 fl
neut, 69.8%
lymphs, 17.7%
mono, 11.2%
eos, 1.2%
baso, 0.1%

I have no idea what these numbers mean. Can anyone please interpret these for me? Thank you

[choijk]

My dad is scheduled to start Vidaza as of today. However, I am so hesitant at this time whether or not this is the appropriate treatment for my dad. My dad's white blood cells and platelets are at a normal range and he does not have abnormal chromosomes nor excess blasts. I am starting to wonder whether or not MDS is even the correct diagnosis for my dad. It probably is, but I am holding onto that hope that perhaps it isnt.

Has anyone heard of someone with my dad's condition where the bone marrow is just not producing any red blood cells but the white blood cells and platelets are normal? I been researching on my end and it seems like patients with MDS often have low levels in all three areas.

Anyhow, I was able to make an appointment with another hemotologist, Dr. Rodriguez, from Kaiser today at 1:30 for a second opinion. We are going to go see him before the Vidaza is about to begin. I dont know if I should have my dad begin Vidaza but we'll see what Dr. Rodriguez's opinion is. In the meanwhile, I have also scheduled an appointment with Dr. Paquette from UCLA for 04/23. Hopefully the appointment with the UCLA Medical Center isn't going to be a strain on my dad's health. I actually spoke with Dr. Paquette and he was really nice and charming and made me feel at ease.

We'll see what's in store for us today..... everyday has been such a roller coaster!

[Linda]

Hi,
My husband has been on Vidaza since Feb 06. His Dr. said that it either will work or it won't. What this means is that for some MDS patients you see results within 4 months. If not then it is not the right med for you. This disease has only had Meds for about 6 years. Before that it was just transfusions. I could be wrong, but that is what he told us.

My husband was responding by the 3rd month. He did pretty well. Now, though, the Dr is trying to spread it out a bit. We haven't hit on the right week count yet. When he waited 7 weeks it was too long. His counts began slipping some again. 6 weeks wasn't great either. He is now trying 5 week spread between vidaza weeks.

My husband was just diagnosed last year. I am sure he had it for about 1-2 years before that. He has had symptoms that long. I thank God that he went to a new Dr. that did blood work and paid attention.
Hope this helps!

About the counts, each week when we go to the oncology center, blood work is done. We get a print out on the spot. We have tracked the counts since the beginning. These can be explained by the nurses if you ask. Ours are more than happy to tell you what it all means. The fact that your dad has <5% blasts is good. Blasts are (imature cells?) I am pretty sure that is the cancer part of the equation. The higher the blasts, the closer to AML. My husband was border line a year ago.

[choijk]

Today I was able to obtain a second opinion with a doctor at the hemotology dept at Kaiser, where my dad is treating at. Although we were scheduled to begin Vidaza as of today, I wanted to get a second opinion as whether or not my dad's dx is correct and whether Vidaza is the appropriate treatment that should be taken at this time in light of my dad's condition.

My parents and I met with Dr. Rodriguez and he was great. Apparently Dr. Rodriguez was at the City of Hope and just recently joined the Kaiser team 2 months ago. Dr. Rodriguez sat with us and gave us his opinion and explained all the medical terms and findings for us in a lay person's terms. He also explained that MDS is probably the correct dx for my dad, but my dad probably falls somewhere along the lines between Myelodysplastic and myeloproliferative syndrome.

It appears right now that my dad's condition is fairly good considering the dx. His red blood cells are the only cells that are currently affected (he cannot generate any red blood cells which makes his hgb drop drastically) and his white blood cells and platelets remain in the normal range. Thankfully as I indicated earlier, he does not have any chromsome abnormalities nor any excess blasts. However, my dad will not be able to receive transfusions all throughout his life and thus, Dr. Rodriguez finds Vidaza reasonable at this time considering his findings.

Dr. Rodriguez is wonderful. He explained my dad's health thoroughly and laid out all the possible avenues that we may take at this time. I am so thankful that we were able to find such a caring and informative doctor. I also expained to him that I would like to get an outside opinion at UCLA which he strongly encourages. Thus, at the end of the appointment, we changed my dad's treating physician to Dr. Rodriguez.

We have a tenantive appointment with the UCLA Medical Center with Dr. Paquette for April 23th but I am trying to get an earlier appointment date. Right now, I am hoping for the best and taking each day as it comes. Perhaps Dr. Paquette can provide insight as to my dad's illness and we can have a new fresh set of eyes to look over my dad's charts.

In the meanwhile, my dad has a follow up appointment on the 27th w/ Dr. Rodriguez and he will probably receive a transfusion then. For the next appointment, I feel like I will be more prepared for what to expect.

Today was a great day considering the graveness of my dad's illness. We decided to hold off on the Vidaza at this time and wait for Dr. Paquette's recommendations. Does anyone have any thoughts or comments on this approach that we're taking?

I would like to personally thank everyone on this forum for alll the information and sharing your stories. Each story is unique and inspirational. Thank you to everyone on this forum!! Ruth, thank you again for all your help. I cannot thank you enough!!!!

I do have 2 question at this time. Does anyone know anything of myeloproliferative? And perhaps the similiarities/differences between MDS and MPD? And perhaps what kind of diet a person with this condition should be on? Any information wiill be more than helpful!!

[Marixyz]

It is so wonderful that your dad is willing to go to various doctors and affiliates to seek other opinions, get advice. My dad is very stubborn, set in his ways (hard headed Sicilian) and won't waiver from his doctor and his current treatment. In fact, when I've suggested he go to Roswell in Buffalo, NY because they are noted as a center of excellence in the field of MDS, he screamed at me and told me to mind my own business, so I am, but it's hard, because I know if it were me or any person I had any persuasion over, I would definitely seek a 2nd opinion at an insititute such as Roswell.

In the meantime, my dad isn't doing any different. Still weak and winded. Tomorrow he gets his blood test, so I'll let you know what the readings are. Last week, he was needed a transfusion. I think he might need another this week - he just doesn't seem to be getting better!

[choijk]

Thank you for all your encouraging words. It means a lot to me.

Can someone clarify something for me please? I know that each case is different in regards to how many times a person can receive blood transfusion. For instance, one person can receive 10-12 while another can receive 50-100 before there is an iron overload. In regards to this, does this mean the amount of times a person can receive transfusions (i.e., 10-12) or does this mean the amount of units/pints a person can receive (i.e., 10-12)?

I apologize if I am not making any sense. But so far, my dad has received 2 blood transfusions. The first time, he received 3 pints. The second time (about nearly 2 months later when his hgb was at a 6.6) he received 2 pints. Does this mean that my dad received 2 transfusions or 5 transfusions?

Thank you for all your help. As the days linger, I find myself more and more hungry for information and I am so thankful that I found this site. Not only for information but also for endless support.....Thank you all again......

[Ruth Cuadra]

...so far, my dad has received 2 blood transfusions. The first time, he received 3 pints. The second time (about nearly 2 months later when his hgb was at a 6.6) he received 2 pints. Does this mean that my dad received 2 transfusions or 5 transfusions?

Hi, June.

Your dad has been transfused with 5 units of blood. It doesn't matter how many sessions it took to get those 5 units. It is the quantity of blood he has received that is important for assessing the risk of iron overload. Each unit comes with a load of iron that, over a period of time, may tax his system. Since it looks like he'll be getting transfusions for a while, you may want to ask the doctor to test his iron levels now so you have baseline values for comparison later.

Regards,
Ruth

[Steve Kessler]

Hi June,

As Ruth said, your dad has received 5 units. Typically, we begin to worry about iron buildup, or overload, in the 40 unit area, no matter how long it takes to get there. The liver gets rid of iron very slowly on its own. Exjade is like a miracle drug as far as getting the overload down. Serum Ferritin is an indirect way of measuring the iron and is normally in the range of 50-160. When it gets to 100 or more is when it starts needing treatment.

As far as taking transfusions all of your dad's life, some people take them for 10 years or more. They get a port installed in their chest, minor surgery, its about the size of a nickel.

Most of us view MDS as a condition, not a fatal diagnosis. He can have many years of quality life. City of Hope is another of the leaders in treating MDS, so if your doc came from there, you've got another good person.

It's not that your dad can't make red blood cells, it's that he makes too few of the normal ones and too many of the ineffective ones. With excess blast cells (immature red blood cells) at a low level, he may be quite a ways away from progressing to a more severe stage, so stay hopeful and enjoy good times with him.

[choijk]

Thank you both for the information! It was so helpful and it really made me feel better. It really eased my nerves.

At the second opinion at the UCLA Medical Center, the doctor indicated that my dad's iron intake was pretty high and asked if I heard of Exjade. We have an upcoming appointment with our treating physician this coming Tuesday and I will definetly bring it to his attention.

In the meanwhile, is there any specific diet I should put my dad on? It seems as if he is losing his appetite. Is there any correlation between loss of appetite and low hgb?

[larry gard]

June:

Sorry to learn of your dad's condition. Sounds like you are on the right track with the other posts to date about this interesting, mysterious and insidious disease of MDS. As others have mentioned, each case is different. I can't add much to what others have said as I am a nyophyte to MDS. If you haven't yet scrolled down on the home page to "Tell Your Story," I suggest you do so as there are quite a few stories that may give you some background, mine also is there along with others. Perhaps you already have joined several national foundations that have excellent educational materials. If not, I suggest you contact each for materials and a membership is only $20per year with periodic mailings from each.

National MDS Foundations: www.aamds.org (Aplastic Anemia and MDS International Foundation) and www.mds-foundation.org (MDS Foundation). I joined both in February 2006 and have benefited from their materials.

Good luck to your dad, you and your family. The educational materials of the foundations are great!

larry gard

[Ruth Cuadra]

In the meanwhile, is there any specific diet I should put my dad on? It seems as if he is losing his appetite. Is there any correlation between loss of appetite and low hgb?

Hi, June.

I don't know if there is a scientific correlation between low hgb and loss of appetite, but given that low hgb makes a person feel poorly, it's not surprising to me that your dad would not feel very hungry. If he can get a little bit of excerise and be offered his favorite foods, he should consume what he needs. I'm not aware of any specific diet recommendations for MDS, but it would be a good question to ask the doctor.

Regards,
Ruth

[choijk]

Yesterday we had a follow up and my dad's hgb was at a 9.4! Although he received a transfusion of 2 pints two weeks ago, it was a great day. My dad started on Procrit and although it probably won't work (because my dad's Erythropoietin is a 686), the doctor thought it was worth a try because there are no side effects? Am I correct on this? Does anyone know what the difference is between Epogen and Procrit? Thanks!

[Wayne O'Shana]

Hi June:

You have done a perfect job as advocate for your dad. I don't think anyone could have done better at searching for information and asking the right questions.

My first (third rate) doc told me I would die after two years of tx due to the build up of antibodies that would cause alloimunization. He also told me "Don't worry, the death is painless." There are zillions of articles in the literature about leukocyte reduction (filteration) and irradiation of blood before storage to prevent alloimunization in chronic tx patients. Bob Carroll was one of our members on the old list who lived for 15-years after dx (57 yo) with treated blood for every tx. Just make sure the doc knows about treated blood for your dad. I'm sure you will be willing to tell him about it if it turns out to be a mystery.

I couldn't stand the attitude of my second (arrogant) doc. Why didn't he start tx before I crashed with a Hgb of 5.0? Anemia does bad stuff to the body, and I hope your dad can get two units of treated PRBC when his Hgb drops below 10.0. Letting the Hgb drop to 6.6 is unacceptable for a middle-aged man and just about as bad for the youngsters.

Epogen and Procrit are trade names for "recombinate human erythropoieten" (EPO for short). Neupogen is the trade name for "granulocyte cell stimulating factor" or G-CSF (NUP for short). These two are synergistic in that EPO can be injected for months with about as much benefit as distilled water, but when NUP is added it can kick-start the EPO into action in very short order. That was my experience.

My EPO was also high, at 800, so I thought getting shots of EPO would be a waste of time but I was willing to give it a try. I was with my third (incompetent) doc now, with a portacath and two bags of treated PRBC monthly. When he started the EPO I mentioned the need for NUP and was like, you know, totaly ignored. It got to be a routine with my bringing up the subject every couple of months and getting excuses like "Medicare won't pay for it. The cost benefit ratio doesn't warrent such an added expense. There is nothing in the literature to support the use of NUP." When he gave that last excuse I was ready to punch his lights out but being a kind hearted guy I decided to print out some ASH conference reports on the subject instead. The next month I shoved three conference reports under his nose and that finally sparked his agreement to start the NUP.

I might have had two more tx before the combination worked. When the good numbers showed up he just beamed "I have never seen such a turn-around and I am so happy for you." I had some very dark thoughts about why he had never seen such a turn-around before. I was still trying to be a kind hearted guy so I kept my mouth shut. My Hgb has stayed in the fourteen range for several years. My counts aren't perfect but, not to worry, the out-of-range numbers are close enough for me.

My fourth doc seems to be OK...finally.

Have you compared the side effects of Vidaza and Dacogen? Dacogen is given at a lower dose over a longer period of time, but it is not as convenient as Vidaza which is given in an outpatient setting. You might ask the doc if there has been any thought of a combination of one of these drugs with low dose Revlimid. Thalidomide, and its analog Revlimid, has antiangiogenic properties. Hagop Kantjerian is one of the authors of a paper from M.D. Anderson about their study "Antiangiogenic Therapy in Myelodyspalstic Syndrome." When you pop up with something like this it lets them know that you are doing your homework. I Google stuff like this for hours, you know, just in case.

My message with this long-winded post: Do your homework. Google everything you can think of. Don't worry about hurting the feelings of some dork who isn't up to the job. Don't ever give up.

[choijk]

Thank you Wayne for sharing your experiences with me! My dad is scheduled for his 2nd shot of Procrit tomorrow. We have a follow up next Wednesday so we will check his CBC's at that time. I just made notes of your experiences and will bring them up to Dr. Rodriguez if we see no changes in my dad's blood counts. Dr. Rodriguez is taking the more conservative approach with my dad's condition since he is a low risk MDS and what I really like about him is that he listens to what I have to say and doesn't disregard anything just because I'm not a fellow medical expert. When I bring something up to him, he gives me his opinion, and supports why or why he does not recommend a particular treatment with medical evidence.

Wayne, I definetly have been doing my homework. I have been all over the Internet, researching up any information that might be helpful. I think about MDS every single moment of the day, from the minute I wake up to the moment I go to sleep. I also tell and explain to everyone that I know or who is willing to hear about MDS so that I can spread the awareness of this rare disease. I, including myself, had no idea what MDS was nor of any other bone marrow failure diseases until my dad was diagnosed. I am trying to educate myself everyday and to find an approach that will help my dad's quality of life. One of the things that I have found throughout my research in the past 3 weeks is juicing of organic fruits and vegetables; although juicing is not a cure for MDS, it seems that some of the patients' blood count levels stabilized -- whether this is due to the juicing or perhaps a benefit of some other type of treatment, who knows, but the patients all seem to agree that whatever it is, they plan to continue doing what they are doing. So I plan to go out this week and buy a juicer for my dad. Has anyone on this forum done this or is currently doing this?

[seniorrico]

I have had good results with Dacogen. Some say it is better than Vidaza. Write me at seniorrico@aol.com
Warren Rich Wilmington, NC current HMG 14.6

[dee]

I think you should tell your dad everything. You can help everyone to stay positive. My dad was recently diagnosed and he is just starting Vidaza. I am concerned about turning into acute leukemia also but don't worry about what isn't there. Lets keep in touch. dee

[JAC]

HI Wayne O'Shana - I'm new to this forum and was reading everything I could. You seem to be informative about a lot so I want to ask you if you know anything about repeat Revlimid treatment? I took it once (5mg) and had success with it for 10 months then it stopped working and counts were bad again so they took me off Revlimid. A Dr. at Moffitt told me about a German Dr. who was using Rev. for 3 month on and 1 off with success for his patients. Thank you and anyone else who might have information on Revlimid.

Jean

[Lillian]

Hello Choijk;

The risk of your father getting AML is low. My husband has MDS RAEB type2 and his type only about 40% do transform into AML.

I wonder why your fathers doctor didn't give your father a Iron Infusion, Rather than waiting for his need for more blood. I say this because it was thought my brother had leukemia. As he was having so many transfusions. His primary MD. Was putting him threw one test after another. I demanded he be seen by a hemotologist. it was found that my brothers bone marrow could not produce the iron needed to form his red blood cells. After several iron infusions. Dave has been transfusion free for 5 years now. They tricked his bone marrow. Perhaps seeking another, Hemotologist advice may bring a better option for your father..

As Ruth and others have said, Iron over load is needed to watch..

My husbands doctor, gave Randy, Iron infusions before he even started his first round of Chemo. Vidaza. He said he didn't want to risk his Hemoglobins dropping.

Just a thought hon.. As I know it can be a scarry thing with a love one going threw so much.

Your dad needs to know and learn all he can about MDS. As it is his body and his right to be informed. It will help him in the long run.

I am keeping you and your family in my prayers..

Lillian

[Wayne O'Shana]

Hi Jean:

I couldn't remember where I had seen something about Revlimid rescue, so it was off to Google for a search through a fantastic amount of information.

No. 1. Revlimid combined with other drugs. (34,300 hits) A lot of stuff about myeloma plus some MDS and the name Velcade kept popping up.

No. 2. Revlimid - Velcade (191,000 hits) A lot of good stuff here but I had to narrow it down a bit.

No. 3. Revlimid - Velcade - Myelodysplastic Syndrome (22,000 hits)
I found what I was looking for here. You might print out one or two of the best articles for your doc.

When looking for Revlimid you will also see it called Lenalidomide or CC-5013. When looking for Velcade you will also see it called Bortezomib.

The Results: With Revlimid and Velcade there is additive and synergistic interaction so that, even if patients are resistant to these drugs as single agents, they can be combined with each other to provide effective treatment. It seems that Revlimid and Velcade work through different pathways in the cell and when combined are more potent than either one alone.

I went through this whole drill so you can show your doc how to do it.

Be sure to let us know how your doc responds to this info and how you respond to treatment.

Best wishes ---