Request for opinions on treatment options

[Conrad]

My wife’s sister is a 28 year old single mom with a young daughter and has been diagnosed with MDS. I don’t know the full classification OR WHAT % OF BLASTS SHE HAS, but she has been given azacytidine, cyclophosphamide and cytosine arabinoside in addition to various stuff for pain and maintenance.
I’ve been reading up on MDS and treatments and am coming to the conclusion that chemo isn’t a long term option, but only likley to extend life for a few years. It seems that only bone marrow transplant can give a long-term chance but even then she risks a 50% mortality.
So, I have some questions for all of you with first hand experience of MDS:
Has anyone had succesful, long-term remission with chemo?
Do you agree that bone marrow transplant is the only long-term option?
How risky and unpleasant is BMT?
What is your personal experience and opinion on various treaments for a young patient who wants a chance to see her daughter grow up?

Any comments will be greatly appreciated.
Thanks,
Conrad

[Suzanne]

Conrad, I believe they still feel that a BMT is the best chance for long term survival -especially for someone your sister’s young age. A lot of progress has been made with using drugs but success there is too new to know what the chances are for long term cure. Any decision would have to take the type of MDs she has into consideration, -some types one can live with a long time.It might also make some difference if this is “secondary MDS”-coming as a result of treatment for another type of cancer. They have gotten much better at dealing with the complications of BMT’s too. My opinions are based on what is happening in the US-don’t know what is happening with either type of treatment in the UK. Others can tell you more about the transplant process and recovery. I know they will advise that you check out statistics on BMT success and how many they have done at any specific hospital before making a decision where to go. Sure hope your sister finds a way to see that daughter grow up!

[Luke and Margaret]

Agree with Suzanne – until we can get some information about the specific diagnosis and the stage of her disease it is difficult to point you in the direction of helpful information.

Is there any way you can find out?
Margaret

[Conrad]

Thanks for the advice Suzanne.
It seems that mostly you confirm what I thought. BMT is probably best option. Nevertheless, it seems that you are having good chemo success yourself at present and pray that it continues.
Here in the UK it seems that BMT success is good with leukemia children but less so with older patients. However, my sister-in-law is in Philippines. They have only done a few BMT there although her doctor was trained in US and has experience from back then. The distance is also part of the reason I don’t have all the data. We are waiting for more recent results to be sent.
Thank you so much for your concern and taking the time to reply. I may be asking more questions when I have more info.
Best wishes and stay well,
Conrad

Quote:

Originally posted by Suzanne:
Conrad, I believe they still feel that a BMT is the best chance for long term survival -especially for someone your sister’s young age. A lot of progress has been made with using drugs but success there is too new to know what the chances are for long term cure. Any decision would have to take the type of MDs she has into consideration, -some types one can live with a long time.It might also make some difference if this is “secondary MDS”-coming as a result of treatment for another type of cancer. They have gotten much better at dealing with the complications of BMT’s too. My opinions are based on what is happening in the US-don’t know what is happening with either type of treatment in the UK. Others can tell you more about the transplant process and recovery. I know they will advise that you check out statistics on BMT success and how many they have done at any specific hospital before making a decision where to go. Sure hope your sister finds a way to see that daughter grow up!

[Conrad]

Thanks for your reply Margaret.
I’m trying to find more information on her diagnosis. Hoping to receive some more results before too long. We have some showing that she is very anaemic and suffering from expected complications of this. Low rbc, slightly high leukocytes and normal platelets. But critically, no info on % blast cells. Significantly, DNA tests show neoplastic transformation of BM stem cells.
Let’s pray that the vizada works well for Luke.
Warm wishes,
Conrad

Quote:

Originally posted by Luke and Margaret:
Agree with Suzanne – until we can get some information about the specific diagnosis and the stage of her disease it is difficult to point you in the direction of helpful information.

Is there any way you can find out?
Margaret

[Suzanne]

Conrad, The types of MDS that are easier to live with do not have excess blasts-We’ll hope for that kind. Any chance she can come to the US-at least for a consultation? They are doing well with BMT’s here for people under 55-60. And beginning to work with mini transplants and stem and cord cell transplants for even older patients.
Yes I have done well-so there are possibilities for people that for one reason or another don’t go the transplant route-at least for extended quality time. But so far the number of people this happens for is still low.
Even though transplants are done in a number of places here, as far as I know the place that has the reputation for the most experience and best record world wide is still Fred Hutchinson in Seattle Washington .

[patti]

Conrad,

I have some thoughts but I want to reserve them until you get more info. on your sister. I also would recommend a visit to Fred Hutch in Seattle. If for nothing else, at least a consultation. I’ll write more when you hear more info.

Patti

[frank]

Conrad,

from one of my friend experience(they live in Canada), the remission can last longer than 5 years, and they both think it won’t come back(5q-deletion), but who knows.

for treatment option, there are several place discuss the BMT and maintainance, even in the blood magazin, but mostly is the patient’s decision on the treatment unless the diease go worse.

have a good place for consultation is the best idea, you may get more info on the diease and what you will face to.

Frank

[DonUK]

Hi Conrad – I think it’s a balance – how progressive is the MDS (i.e. prognosis) versus risk of transplant.
Do not kid yourselves – a transplant is not a walk in the park by any stretch of the imagination, and carries obvious risk. But then I’m probably biased in that respect.

Take care,
Don

[Luke and Margaret]

Conrad
As an earlier writer indicated, much is improving in the area of transplants so that they are less risky, but tansplants are never risk free. In our case we were given a 50/50 shot at not making it through the transplant, if we could ever solve the many, many barriers to even getting that far. That kind of stat kind of makes you sit up and take notice. It forces you to ask if that kind of risk is the right one to take.

It really does help to know the usual course and prognosis for your MDS type, what drugs are useful in slowing the process down, and whether specific symptoms can be managed differentially and for how long.

When you have both sides of the coin, your perspective becomes more educated. For instance, if one has five or ten good years ahead, then the risks of transplant may not look as attractive, and the notion of “cure” takes on a different meaning. That is the balance Don very wisely refers to, I think.

In the midst of learning about the disease and its medical response, its useful to try and remember that the quality of life throughout is at least as important as any treatment course. Spritual well being and a good perspective about the meaning of the disease in ones’ life have been shown by research to play important parts in sustaining quality of life.

Its a lot to take in, I know. In our own case we have had only four months to shift gears from looking for an absolute cure, to finding ways to live well and meaningfully with no guarantees and a completely unknown future. Its not an easy process, but somehow each of us arrives at some sort of acceptance of it all. Not giving up, more rolling with the punches better.

All the best on this journey; we’re all on it with you.
Margaret

[patti]

Conrad,

Some generic thoughts about your SIL’s MDS. One thing that will help no matter what course of treatment she decides on and what type of MDS she has, would be to consult with a cancer naturopath that can help her eat healthy, get on supplements and in general help her build her body up. If she’ll do this for a few months before she starts any treatment, the success will be much better. She will likely have less side effects, etc. Our naturopath will actually work in conjunction with the hematologist to cater the natural treatments to help the medical treatment be more effective, if possible. This will be especially true if your SIL chooses to have a BMT. BMT’s aren’t a cure all for many people and have their own set of problems. But I do believe that the stronger a person is going into it health wise, the better off they will be in the long run. So for now, even if she doesn’t know what to do medically, she can start with a cancer naturopath to get things going to stronger health right now.

As others have said, it is definately a balance. But I do believe you can balance the natural with the medical.

Patti

[Conrad]

Thanks to everyone for your valuable information and advice. The 50/50 statistic is about what I had estimated from various things I have read. (I have read a lot recently.) Not a risk to take lightly.
Sorry to hear of your sad loss of Karen, Ron. It’s a sobering reminder to us. Thank you.

I will let my SIL (I’m presently withholding her name as she doesn’t know yet that I am writing about her and so respecting privacy) about this forum so that she can get involved with it herself. I think she would benefit a lot from talking to people that understand fully what she is going through.
I have aslo drafted a letter for her to give to her doctor requesting the neccessary information for us to have a better idea of the classification and asking his opinions on the prognosis and course of action.

I agree with you, Patti, about keeping up a healthy diet. It seems that she has neglected that at times and it is so important to keep the body strong enough to defend itself as well as it can.
The quality of life that you refer to, margaret, is so important. I know that my SIL really considers whether life is worth it when she is on chemotherapy. You need gaps when things feel good to make it worthwhile. Having a daughter that loves and needs her is a blessing that I believe will keep my SIL alive.

Thanks again to you all,
Conrad

[lindajo]

I was initially told I was in transformation and had 6 months to a year. That was almost 15 years ago. I was 30 my daughter was 7. She is now graduating college and getting married next June. The thing that made the most difference is that I had a private disability policy and was able not to work and rest when I needed. I also changed my diet gradually and consulted a chiropractor for pain maitenance &nutritional supplements.

Look to a naturapath, chiropractor or nutritionist for advice. Dr. Andrew Weil’s books are also of great help.

[vanguardsheet]

Conrad, understand that your sister in law resides in the Philippines. Other than the US centres of excellence, she can consider Singapore centres too which may be nearer for her. I’m from Singapore and my Dad has had excellent treatment in the local hospitals too. I’m not making any specific sales pitches but some consultants are also trained in US (Fred Hutch) and UK too and the docs here have made significant progress in the areas of stem cell, cord blood and mini transplants. Just wish to point foregoing out as I guess it helps to understand the options available to her.

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