i am confused need help

[jayc]

i was diagnosed with MDS-5q 2yrs ago. I was on revlimid daily for 18 months but then I became neutropenic and RBC started to decrease. I have been on PRBC-2 units every three weeks since march of this year. My hgbl fluctuates between 7.2to 8.3 before transfusion and then rises to 8.6 after transfusion. I feel energy for about a week and a half and then return to fatigue, dizziness , arm and chest discomfort etc..My doctor who is an oncology hematologist and excellent in working with and for me, stated that without treatment I have maybe two years prognosis. I have been reading other posts on this site where people with a more complicated type of MDS have survived over 10 yrs. I've been for a second opinion and got same diag. There is no other treatment for me at the moment and when my ferritin level reaches it's safe limit, I won't be able to do chelation.
Anyone out there have the same problem?????,

[bebop]

I would ask about vidaza. I know there are some on here that when one stopped they would try the other.

[Whizbang]

I agree, some have been on vidaza for quite a long time, and after it stopped working, a few have gone on to Dacogen with additional success...

I can say that Dacogen worked wonders for me, but I only needed it to work for a while, to get me into remission before my BM transplant....

Good luck to you jayc...

Originally Posted by bebop

I would ask about vidaza. I know there are some on here that when one stopped they would try the other.

[jayc]

I thank you both and will suggest this to my oncologist during my next appt.( next week Oct. 2 ). you gave me hope.

[billyb]

Jay, everybodys body acts different to iron build up, some folks need to get rid of the iron faster than others, sometimes if iron levels are high its safer not to chelation, thats a doctors call and every individual is different. I found it easier to look at the Hema for a guage for blood, after a while when you get transfused it does make you feel better, but your certainly not going to want to run a marathon, it is needed mostly to help carry oxygen throughout the body thats one of the reasons when your rbc is low you feel like do-do, you get a throbbing in your head and you get winded easily, if you are healthy enough ask you doctor about Provigil, taken moderately, it can boost your energy. Jay Im telling you from experience, dont focus on time ( I know its hard sometimes ) focus on a treatment plan and while its working....live, and if it stops working get with you onc and try someting else, You are in my thoughts and prayers...You are not alone, we are here with you......Billy

[Birgitta-A]

Hi Jay,
Do you have low or high risk MDS? You know Vidaza and Dacogen work better for high risk patients. In Europe Vidaza is only approved for high risk disease - I have read results from 0 effect to more than 50% improved patients with low risk MDS.

How old are you - is SCT a possibility for you?
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006. Positive results with Thalidomide 2010-2013. Now trying Revlimid since July 2013.

[jayc]

billly, I am pleased that you responded to my plea. I'm not aware of Provigil and will ask my onco about itWednesday. I don't think about time cause I believe in eternal life and know that MDS affects my body but not my spirit. I was just confused why others with more complex mds were doing so well. I now know. thank you for reminding me that everyone is different, duh!!! I'm going to blame this on lack of oxygen to my brain cells.
it is comforting to know that we are truly there for one another, to support, advise and pray for each other. My prayers, thoughts and hope are with your entire family forever. jay

[jayc]

thank you for responding. It's so uplifting when we help each other. My onco isn't keen on giving me vidaza or decagon. He explained that it would only cause more complications, but I will bring it up again when I see him next week. He is very good for and with me because of his openness, concern and truthfulness. This is important to me because I was an RN in my younger years but still have to know about everything.

I am a young 72 years and was dx with -5q low risk MDS two years ago. I was on revlimid for 18 months which raised my rbc but then suddenly lower my neutrifil count to .5 and my rbc to 7.2 my other counts are ok. I currently receive prbc every 3 wks but my onco feels that it may change to every 2 weeks. this is ok with me as long as I can still go out during daylight and don't grow any fangs. my thoughts and prayers will be with from here on in. jay

[sbk007]

Jayc, There's a member on here that has had over 200 Units of PRBC's over the last 5 years and they're still posting.

[Greg H]

Originally Posted by jayc

He is very good for and with me because of his openness, concern and truthfulness. This is important to me because I was an RN in my younger years but still have to know about everything.

Hi JayC from another North Carolinian!

I think it is great that you have a good relationship with your hematologist, and I think it's super you have been for second opinion. I have a great relationship with my local hematologist, as well. But there is no way I would take his word as the last word on my treatment. MDS is a rare disease. the number of true experts on it is very small. Even the experts at Duke and UNC are not the top experts in the field.

Unless there's more to your story than we have heard so far, your hematologist sounds way too pessimistic about treatment options for a young 72-year-old -- particularly if he's telling you you have only two years to live without treatment.

Some docs are transplanting folks your age. You might not want to go that route, which I respect. And you might not want to suffer the hit to your platelets or neutrophils that you're likely to get with Vidaza or Dacogen. sbk007 is very correct that some folks have hundreds of transfusions (I think I've had 95 units).

But still. If you're interested in living beyond your 75th birthday (and your loved ones would be interested in that, too), maybe you should arrange a trip to Tampa or Houston, or Baltimore, or Bethesda, or Cleveland, or Cambridge and see if you have options beyond those your local doc has suggested.

Take care!

Greg

[Honeybun]

Great answer Greg. I don't take my haemo's advice as final, I don't think they have as much experience as the rest of the world or Australia here in Perth. We are even thinking of moving East where the may have more experience.

It's your life it pays to look around.

Honey

[LizR]

Greg is certainly right. Many MDS patients have a local HemOnc and also a specialist. Our specialist is at Mayo Clinic in AZ and we travel there every so often to discuss the treatment plan. The local Dr. then puts it into action and shares the test results with AZ on a monthly basis unless there is an immediate issue. And no, they don't always agree but the specialist wins. His life is dedicated to this disease and he knows his stuff. I really like our local Dr. but he doesn't know enough about this specific illness and its many different types. We all work together as a team to make the right decisions for the best outcome.

Knowing we take a proactive approach gives us peace of mind. We can't change the illness but we can change how we deal with it. You can too!

Liz & Bob

[jayc]

Greg and Honey, thanks for your responses. No , my onco doctor does not have the final word. I am responsible for my own body and take no chances, however, I do not have the funds to travel around for answers so I have to work with what I have. im planning to live long and be of use to others but I would rather have quality of life instead of quantity. My spirits are high and I don't look as sick as I feel so I feel that's a plus. jay

[Lifeguard]

Hi Jayc,

I too have Del 5q and was just wondering when you had your last bone marrow biopsy? I have one every six months due to not reaching cytogenic remission. If you haven't had one since diagnosis then you may need to have one to check if you have any additional deletions to other genes. Your diagnosis and treatment options would be very different then. There is also some research out there that states that Revlimid can be effective again by having some time off the drug. I'm sure I saw this information in the MDS Beacon (Facebook page). I will try and find the article for you.

Rachael

[Lifeguard]

Hi Jayc,

This is the article I mentioned earlier.Unfortunately it was only a small study, but it does give one a little hope.
http://www.mdsbeacon.com/news/2011/0...ents-ash-2010/

Rachael

[katgio50]

My husband had low risk MDS for 18 months with biweekly Procrit shots and lived a normal life with low counts. In June his counts kept falling and another biopsy showed that his MDS was now AML with 51%blasts. He had induction chemo and is now headed for a transplant at age 74. He also is a young 74. Do not let finances be the only factor as there are resources available including free housing etc. We also believe in getting second opinions from the best. Good luck with your decision.
Kathy G

[riccd2001]

Hi jayc: I'm still here and doing OK. Before I was DX with low-risk MDS, the general consensus by several ICU docs was 3 to 6 months. That was in Jan.2008.

When I was given my confirmed DX of low-risk MDS by my haemo, median survival with del 5q was 54 months. So I've passed that mark(July 2013) and still getting along OK albeit with regular PRBC transfusions. YMMV but for me, a Hgb under 70g/L makes life difficult. I'm not a 100 per cent sure, but a similar DX as mine today has a higher median survival of 60 months.

So before your next doc appointment try to have a relative or friend go with you -with a pen & paper- to ask your questions and take down info that doc gives to you. Good luck and let us know how it goes.

[jayc]

hi rccd-thank you for your response of hope. your suggestion of taking someone with me is thoughtful and correct. I did that at the onset of my dx but it didn't work for me. I see him every six weeks after cbc of three wk intervals and during that time I write down everything that's on my mind and go over that list right after he gives me the lab reports. I then take notes that I feel are important and I feel comfortable to even ask what some may feel as dumb. we don't stop our session until I feel satisfied.
you are right in saying that today's prog is 60 months but there is only One who truly knows our special Time. That and friends like you and the other responders give me peace and hope Jay

[jayc]

Thank you both for info. I asked my hemo onco on my last visit if I needed another bmbiopsy but he said not necessary and would be able to note changes in the blood tests he has done. I think I better ask him again. Tests for the protein in our liver? similar to Procrit shows that my body is over producing to come to the aid of my deficiency so Procrit isn't needed.
relimid caused my neutrophil count (anc) to go down to .5. I had to be on neutropenic diet and precautions for 4 months and it has risen to 1. this is why he is hesitant about starting me on revlimid again. jay

[Honeybun]

As Katgio said don't let finances be a problem, ask your doc for a referral to your hospital social worker. They can explain what finance options are available to you as well as help, such as food services cleaning etc, I even found a company that would walk and feed my dog should I be rushed to hospital. Here in Australia the cancer and leukaemia foundation both pay bills (utility etc) up to $1000, there may be something like that for you available in the US, which may free up some of your personal funds. I am aware that your systems over there are very different to ours but just another option to look at. I hope I am not giving you false hope, perhaps your fellow Americans can confirm, before I send you on some sort of goose chase.

Alternatively you could just ask your doc that you would like to get a second opinion, he may write you a referral to another hospital that is not too far. If you explain it to him he should not be offended or it could force his hand to let you have the tests you seek to ease your mind.


Honey

[DebS]

jayc,

I know that you can feel the love, hope, encouragement, and advice this forum provides. Look at the concern you have generated in just a few days!!


Greg, put it very eloquently! Get thee to a specialist! This IS a very complicated disease and it seems you have been put off a bit.

Let nothing stop you. As you see, the folks here have not and do not.

Best of luck to you.

Deb

[jayc]

thank you both , yes I do feel everyone's love and support and it is uplifting. At the onset of my dx I did seek out all resources , especially financial since that plays a great part in my life right now. I do not qualify for Medicaid, which funds a lot of different aids, however medicare did pay for my revlimid for 18months which is extremely expensive. they also pay for my prbc transfusions. very very grateful for these. My hemo onco works with the specialist I went to see for a second opinion. He is on the excellence list of MDS foundation so I feel confident with both doctors but not enough to keep me from doing my own research and praying.
My mds doctor knows my financial situation and had his social worker research with me. Nothing found out there that I didn't already seek. Part of my job I had before I had to retire was to help connect people of need with the proper helping agencies so I was a little ahead of the game there.
I am in public housing at this time after selling my home to pay med bills but I still fall between the cracks for other helps. The gov has been good to me so I really will not complain. I am still able to care for myself in every way but much more limited in energy as you all know. I live alone but know that my children who live nearby will help when needed (unable financially)
I like to stay independent as long as possible, it keeps me a young 72.






9

[Greg H]

Originally Posted by jayc

He is on the excellence list of MDS foundation . . .

Hey JayC!

This is good news; I'm gald that your second opinion was from an expert.

As you have probably noticed, folks like me on this forum are not particularly shy about telling other folks what to do. That's partly because we encounter so many folks here who just see their local heme/onc, get fairly unaggressive, non-state-of-the-art treatment, and don't bother -- don't even know -- to look for other options.

It sounds like you have the situation well in hand from your perspective, and you have certainly done the forum a service by acquainting us with the economic challenges folks face trying to access health care in the US.

What still has me a bit mystified is that your doc isn't encouraging you to pursue a more aggressive course of treatment -- or at least look into clinical trials that might hold out some more hope than a two-year prognosis. As a healthy 56 year old, I just don't think I'd be satisfied with that -- and I think I'd feel exactly the same way as a healthy 72 year old.

We are all cut from the same cloth, but we are all stitched up in a unique pattern. And learning to respect the unique patterns of others is a important lesson that I have to relearn every day.

I hope your transfusions continue to go well and that you beat the socks off that two-year prognosis!

Take care!

Greg

[jayc]

greg I have a list of questions to ask my onco on 10/3/13 thanks to everyone's suggestions. For me it's not even over when it is over . My onco agrees with me but I still need to ask more questions.

[sbk007]

If he said 2 years w/o treatment then get the PRBC's and live to 100.
PRBC's=treatment. He might have been telling you if you don't do anything at all 2 years but w/tx's could be 20-30.