MDS 5q-

[andrew]

Greetings from Brighton England

My mother was diagnosed with MDS 5q- a year ago and had her first transfusion last July after her haemoglobin fell to 7.7. She is taking thalidomide which has reduced the frequency of her txs. Could someone tell me how many transfusions can the average person sustain before iron overload normally sets in? I would also be interested to know if there are any people out there with 5q- who could tell me what to expect in the comng months /years etc – my mother’s haemotologist has been very open with me – but it is always good to hear from people with hands on experience (sorry did not know how to phrase that). Her haemotologist told me she can expect to live anywhere from 1 1/2 to 5 years. This was dreadfully sad news. I want to ensure that she has as comfortable life as possible.

[Suzanne]

Andrew, How old is your Mom and what designation of MDS does she have. 5Q- means different things. In the Ra and Rar’s I was told it suggests good response to treatments , In RAEB is suggests difficulty in getting a response to drugs and translates to a “higher risk score”
I have/had RAEB -t with a 5q- (extrememly high risk) and did respond to chemo when I progressed to AML. I have been in remission for 1 year and 3 months. And have not needed a TX since my counts recovered from the consolidation round of chemo a year ago.It has been almost 2 & 1/2 years since I was diagnosed and given a prognosis of 5 months to 1 year so don’t give up yet.
I have a friend who is in the hospital at age 74 getting chemo for AML.
As we all say if you Mom wants to fight this get her to a Center Of Excellence for a consultation and treatment options. the way people “feel” with this disease, from side effects from drugs used and the progression of the disease is very individual and also may be enfluenced by other health issues. Except for a few days during Chemo I have been lucky enough to feel well and lead a pretty normal life.

[Neil]

Hi Andrew,
It generally takes around 25 transfusions before iron overload begins to become an issue.
BUT, For those who have iron overload, chealation with Desferal will help control the problem.
There is also an oral pill in clinical trials in Europe. It might be an option, but would use caution till more is known about it.
Have a friend who has had over 400 TX over the last 14-15 years. He chelates 5 nights a week to control his ferritin level.
Another consideration—it take about 14 years for iron overload to effect organs.
If chelation is an option, do not wait till ferritin levels are high before starting. Get it under control early to shorten the process.
Her doc should be able to provide some good advice on how to approach it.

[Suzanne]

Andrew emailed me saying he cannot log on to the forum-has tried everything- so Neil I gave him your personal email address. I think he can read but not post but just in case I will forward your answer to him.

[andrew]

Hi there – I seem to be able to log in now – thanks for all the information – Neil can I clarify something with you – when you say 25 transfusions is that the amounts of units?

[Neil]

Hi ANdrew,
Not sure they were all the same.
Probably 2 units of packed red cells per TX.
He may have been getting more when he bean and tapered off as his counts became more stable

[andrew]

Thank you all for your advice – my mother has had about 4 txs usually with 3 units of blood each time. On another note, since she has been on the thalidomide (since last Nov), she really seems to have picked up – both mentally and physically. The fact that there was a two month gap between txs boosted her spirits (previously she could not go more than 3 to 4 weeks without txs). She had a tx 2 weeks ago and I saw her last night and she is full of energy and very pink still!! So fingers crossed.

[Neil]

Hi Andrew,
This is generally the way Thalidomide works on those that respond.
There have been docs that keep increasing the dosage as the patient responds. Would have a discussion with the docs if they want to do this! Seems that as the dosage increases the side effects get considerably worse, frequently to the point where they must discontinue Thalidomide.
If her treatment is successful now, is it really nesessary to keep increasing the dosage.
They typically start at 50mg and slowly increase to as high as 400mg. When they pass 300 mg the side effects begin to worsen.
The question is: if it works at a lower dosage, why increase to a point where they must stop?

[andrew]

Thanks for that Neil – I don’t think her doctor has any immediate plan of upping her dose. On the same topic – would you or any forum members have any idea how long thalidomide can go on boosting her blood – is there any data? Cheers

[Carl]

Andrew,

I was on 200 mg for 10 months before I stopped due to the numbness in my fingers and feet. I did not have a transfusion or need Procrit while I was taking it. I agree with Neil there is not any reason to increase the dosage if it is working at a lower dose. I was off of it for 3 months and just started back at 50 mg to see if I could get a good response without the side effects and also resumed Procrit once a week. I also agree with the others to throw out the prediction that she will live only a certain amount of time since your Mother apparently has the least severe type of MDS.

Good luck to you and your Mother.

[Neil]

Hi Andrew,
Am not certain how long a patient can stay on it with good counts. Have talked to one man who was TX independent for a year. Think it will vary from patient to patient.
They usually get off because of side effects. That being the case, would expect the docs to change over to Revimid or Revlimid.

[andrew]

Thank you to everyone for answering my questions so diligently. I really appreciate it and don’t feel so alone now.

My mom has not had any negative reactions to her 50mg dose of Thalidomide(it doesn’t even make her tired?!!) So – I agree with you all – if she is doing OK on 50mg I will definitely discourage her from migrating to a higher dose.

I will keep you all updated on my mom’s progress.

[Author]

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