? bone marrow results mean

[Chirley]

Hi, I've just got my latest BMB result. I've been reclassified as MDS RCMD Int 1.

I don't understand the part of my result which says...55% of erythroid precursors are ringed sideroblasts. Does this mean I have RARS as well? or is this a normal finding.

My marrow is now hypercellular with less than 5% blasts. Peripherally I have anaemia and leucopenia but the bone marrow also shows ...increased megakaryocytes with dysplastic features... although my platelet count is normal on blood tests. Does this mean all 3 cell lines are affected?

I have been asked to take time to consider my treatment options but he gave me a request form to do tissue typing for BMT.

It turns out that Revlimid is not available here ( I thought it was) and I would have to pay $40,000.00 for 6 cycles of Vidaza. I can afford the Vidaza but I would rather not have to if there are other options. I want to opt for the Valproic Acid but I've had it before for Trigemnial Neuralgia and I developed liver dysfunction. My liver enzymes are already high (? from iron) and the haematologist appears to be reluctant and says that I only want to try it because it's easy just to pop a pill and he is worried my liver could fail.

It looks like supportive treatment only is coming to an end and I have to make some decisions.

I'm feeling a little overwhelmed tonight but I'm sure I'll be able to think clearer tomorrow.


I've been told to do as much research as possible, write out a list of questions and talk to as many people with this disease as I can. The haematologist gave me a list of websites and organisations to contact. I'm going to be busy.

[Birgitta-A]

Hi Chirley,
As far as I understand you have RCMD-RS. Do remember that the statistics about survival are from 1997 and we live much longer today.
http://www.cancer.gov/cancertopics/p...al/page3/print

I think that as long as your platelet count is OK they won't classify the thrombocyte cell line as affected.

Valproic acid as monotherapy has not showed so good results as Vidaza (about 50% of the patients improved). This study - with 24% of the patients improved - is quite old but now they often combine valproic acid with Vidaza, Dacogen or other drugs. You know we have one member who got a very good result with valproic acid (Epival). http://www.ncbi.nlm.nih.gov/pubmed/16270213

I thought that Australia had the same system as Sweden with high taxes and hardly any costs at all for treatment and I am surprised that you have to pay so much for Vidaza .
Kind regards
Birgitta-A

[Helen Robinson]

Hello Chirley

I am sorry to hear the results of your BMB. I am not familiar with your variety of MDS. Revlimid is approved for myeloma in oz and sometimes the drug companies provide some drug free on compassionate grounds.

Perhaps they may not be suitable treatments for your type. If you google your type+ the drug you may come up with some statistics as to effectiveness. Revlimid is not approved because it is not effective for the majority of types but the drs can ask for special approval if there is evidence that it may work.

I know there is age limit for a BMT . Good luck with your research.

Helen

[Chirley]

Thanks Birgitta and Helen.

I don't understand why the pathologist and haematologist said I had RCMD whereas it's obvious I have RCMD RS. Maybe the WHO classification is a little unfamiliar to them. I haven't done a lot of research today because I find I need a break from thinking about it.

My doctor told me about the compassionate grant from the drug company for Vidaza BUT you have to have paid for the first 6 cycles and responded well and then they might grant free Vidaza thereafter. I have contacted my health fund and they said they would consider paying the entire cost if my doctor writes to them and explains why this drug is the drug of choice. I have also contacted my Federal MP and I was told they could make an application for provision of Vidaza on compassionate grounds as well. It turns out Vidaza has been recommended for approval for the PBS they are just finalising the complexities of authority approvals etc. It has only been approved for MDS Int 2 and worse.

I wasn't told about the cut off age for a BMT but maybe this is why he is starting the process so quickly. I turn 54 next month. BMT definitely is not my preferred option.

Helen have you had a lot to do with the Leukaemia Foudation? Do you know if they organise conferences and things? I don't feel I need their emotional or physical support at the moment but it would be nice to know they were there if I needed them.


Birgitta, yes, we pay very high taxes and we do receive good services in return but we have a small population and therefore a small tax base. Our health system is constantly in the news for it's ineptitude and underresourcing. There maybe changes on the way. I, personally have not had any major problems with the system but I see where it could be better.

I have always been a procrastinator. I love procrastinating. I was feeling stressed once and I attended a psychologist and I told her that I procrastinated, she just laughed and said that we would work on that. We never did. But, I think the time for procrastination has gone and I have to make some decisions.

Once again thanks for the replies.

[Birgitta-A]

Hi Chirley,
You are very young and most centers will accept you for a SCT during at least 6 years if everything else is OK. I am much older and at my age it is not so difficult to accept that I won't be very old.

If you decide to try drugs Vidaza is the best choice for most patients - hopefully the reseachers will soon know which patient that will respond.

I think $40,000.00 is a lot of money and if I wanted to try Vidaza I should ask my doctor to write and explains why this drug is the drug of choice - the drug has been approved by FDA for low risk MDS and he can get all kinds of statisics from their site.
Kind regards
Birgitta-A

[LynnI]

Hi,

It is my understanding, there isn't much difference between RCMD and RCMD-RS for treatment etc.
I have RCMD with severe fibrosis, however I am still responding to the VPA with no side effects and my HGL has climbed again into the 130's. 21 months transfusion independant, which is amazing.

A few weeks ago, we thought the VPA was starting not to work and when I spoke to my MDS specialist about were we go now, he wanted to seriously consider Revlimid or ATG as the next course of treatment and before my hemoglobins dropped to where I needed transfusions again. I asked him about Vidaza and he said no, not at this point because he wanted a drug available in the future if we need it, especially when I get worse and if other treatments fail.

We also haven't had the talk yet about the big T, hopefully that isn't something I have to consider for years if at all.

Good luck, I hope they figure out what you need and you have an excellent response!

[Helen Robinson]

Chirley

The Leukaemia foundation has a site and patient forum at talkbloodcancer.com. They have professional people monitoring the site. The telephone contact is 1800 6220 420. I know that their QLD branch seems very active. I have not had much contact so far but I was offered assistance when we were in Melbourne on a trial. Fortunately we were staying with old friends and were well supported.

Keep smiling

Helen