MDS Low Risk

[majorindy]

Has anyone received a MDS Low Risk diagnosis. If so, how long ago and how has your situation progressed. I just received this diagnosis and plan is for "wait and see". I am 69 years old and saw Dr. Cripe at Indiana University Simon Cancer Center.

[rar]

Dec 2013 diagnosed MDS so mild it will never need treatment. Condition changed to MDSRAEBII ie. high risk. July 2014 SCT. Survived since then. For mild MDS wait and watch is a reasonable choice. Watch very carefully. Dates approximate.

Ray

[majorindy]

Thank you for your reply. They told me to get a blood test every three months. I don't have a warm and fuzzy feeling with that and intend to do one monthly. What treatments were prescribed and side affects. Thank you.

[rar]

My oncologist says that I am doing well enough to be a poster child for a successful transplant. It seems everyone reacts differently. I will probably suffer from GVHD lifetime. Mostly it is manageable. Dry eye, mouth and throat, itchy scalp, failed adrenal gland, and dizziness. For a summary of what I experienced 16 months post transplant look at this post. I get monthly blood tests, If I were you I would be comfortable with monthly until you are stable.

http://forums.marrowforums.org/showthread.php?t=5217

Ray

[Cheryl C]

Hi majorindy - I've been on watch and wait for over 5 years now. I have a blood test every 4-6 weeks, depending on how I feel. My haematologist just gives me a request form for 6 at a time and I can choose when I have them. I keep a spreadsheet record of my results so I know at any time whether I'm still stable.

I live with an average WCC around 1.5 and neutrophils around 0.7, lymphocytes 0.3-0.4. As long as I don't have a drastic drop I'm quite happy to continue as I am. Although having Intragam for hypogammaglobulinaemia doesn't raise my WCC I believe it does help me fight infections. I see my haematologist about every 3-4 months. W&W is scary at first, but you will get used to being on that as long as your results remain reasonably stable.

[majorindy]

Thank you for your replies Ray and Cheryl. My numbers don't look all that bad but I was told I had an increase number of Myelocytes and Dysplasia. Also had mutations of ASKL1 and TET2. Platelets were 45,000; White Blood Count was 7.3; Hemogloubin 12.3; Hematocrit 36.7; Absolute Neutrophil 3.4; Absolute Lymphocyte 2.9; - Interesting that my hemoglobin increased from 11.4 to 12.3 in last 60 days by eliminating coffee. Also take supplements - Vitamin C; B-12; Folic Acid; Vitamin K-1 and K-2; Iron; Daily Multi Vitamin; Vitamin D; and lastly Beet Root capsules which i started again a few days ago. Beet root appeared to work good last February when my platelets dropped to 36,000. Then went up to 65,000. I quit taking it as I was going to the bathroom more at night and feeling a little queasy. It's difficult as you read conflicting information on the internet concerning life expectancy and treatments.

[Dick S]

I was on wait and watch from 2008 to 2016 with quarterly blood tests for MDS. When numbers started to drop they put me on bi-monthly shots of Darbepoitin Alfa to try to fake the bone marrow into making more red blood cells. 11 months with zero help. This past February it changed to CMML, Chronic Myelomoncytic Leukemia and I am now starting my seventh cycle of Vidaza, now my HCT is at 28.2 and my HGB is at 8.9 with Absolute Neutrophil Count at .9, so the numbers are not getting any better, but thank the Lord, not getting any worse either. I just take it One Day At A Time.

[majorindy]

Thank you for your reply. I also have two mutations TET2 and ASKL1. From what I have read the TET2 is the one for concern. Also told I had an Increase in the number of Myelocytes and Dysplastic of Myelocytes. In God's hands.

[Bossywife]

My husband was hospitalized in 2008 with dangerously low RBC, WBC and platelets. Once he was treated for a suspected "infection" and also new onset Diabetes, he was released with no diagnoses, but quarterly bloodwork for diabetes and platelets.

After 8 years of platelets being 40-95, I started asking questions, then I insisted on a bone marrow biopsy, and it was then that he was diagnosed with MDS RAEB I.

At that time (2015) we were told Watch and Wait, but they wanted bloodwork monthly because he plays hockey and can't play if his platelets fall below 40. So far so good.

NOTE: His bloodwork drastically improved when his diabetes was controlled and he went on Folic Acid, B12, and stopped consuming Aspartame.

We are going for Myeloid Gene Panel testing in 2 weeks.

[Yukoner4]

I am 66 years old and was diagnosed with MDS 5 months ago, I have low platelets last blood test they were 32, my hemotologist wants blood test every 2 months and as I live in a small northern community in Canada I need to go see her twice a year for follow up, I feel good only problem seem to have is no energy and sore a achy shoulders other than that am good

[Hopeful]

Hi Yukoner4,

Did you have a BMB to confirm your MDS diagnosis? What type of MDS do you have?

Can you get your platelet count tested more frequently? Is that the only count that is low?

2 months between blood tests seems a little long to me.

[DanL]

I stayed in watch and wait for about 3.5 years and then changed over to RAEB1 at which time i moved to transplant. I did not require treatment nor transfusions during that period, just regular monitoring. I had normal-ish RBC and WBC, but platelets that stayed reliably between 20k and 30k - never higher, never lower.

[Yukoner4]

I am very new at this, I did have a BMB and was diagnosed with MDS low risk, that is all i know, as far as i know only my platelets are low, I am going to get it tested again tomorrow and have a scheduled visit with Hemotologist on November 30, I will have a list of questions to ask including a request to get the results of all my blood tests will also ask if there is any other description for my MDS,
If you have any suggestions i would be pleased to hear them

Ian

[Hopeful]

Hi Ian,

You may want to start a new thread for yourself, as I think your post may be getting lost in this thread, or you would probably see more responses from this forum

You should ask for all of your blood test results and your BMB results including flow cytometry and cytogenetics.

You want to ask your hematologist what type of MDS you have and how this diagnosis was determined.

Typically, for MDS, you must have significant dysplasia (in over 10% of your cells) or cytogenetic abnormalities and/or elevated blasts. The marrow is typically hypercellular with MDS, although it can be hypocellular. Look for the cellularity on your BMB or ask your doctor. If your marrow is hypocellular, they will need to rule out Aplastic Anemia.

Other conditions can mimic MDS, so it is important to feel confident in your doctor's diagnosis.

Have they done extensive testing for other things like B12, heavy metals, etc?

Are your counts stable since diagnosis?

Hope things go well tomorrow!

[Yukoner4]

Thanks Hopefully, i will take your advice

[marylee-jane]

Hi there, Yes i have low risk,i was diagnosed some 6 years ago and have my transfusions every 6 weeks. I started with transfusions 10 weeks apart now its 6 possibly 7 weeks..i keep reasonably ok otherwise.

My red cell count drops very fast sometimes, for instance I can be 98 red cell then in 8 days be 72 .It,s something that's been happening in the past 2 years , I keep a close eye on it, at around 5 weeks, getting tested every third day.Just to make sure i don't end up in an ambulance as i live alone and have had one situation ending up in intensive care with a Hb of 67 with my heart failed and kidney, they managed to stablise things...Now im a tad carefull of that happening again...that was in April of this year.
I had my usual blood test and my Physician forgot to check my results!!I don't have that doctor anymore...

Like I said we are all different

I hope this helps, getting a good working relationship with one Doctor who knew this complaint,for me was really important, it took a good 2 years to find that doctor.
I do a lot of research choosing reliable information, from reliable sources hospitals universities etc... the knowledge on this site, is amazing, I have learnt such a lot here.
.
best wishes marylee-jane

[Naive]

I find that sudden Hb drop interesting. That’s what happens to me.

I’ll slowly drop my Hb over a few weeks then I’ll drop 20 or more in the next few days to a week. Last week I was 97 and then 6 days later I was 76 and I turned a yellowy white colour. Because the count drops fast I don’t have time to compensate and I get really dizzy and breathless and my heart misses beats and my blood pressure drops to the 70s and 80s. I average two units of blood every 3-4 weeks and this raises my count to about 105 (I’m only a short, thin person).

[marylee-jane]

Hello there,
yes its a nuisance when it does all of that i tighten up around my rib cage and its hurts to breathe when it drops a tad fast, and I get really tired. If it drops to fast, then goes to far down, i cant walk a straight line,(I don't drink!!) and I am kind of not there ,its like coming in and out of a fog...it has only gotten like this once pretty badly ..I have similar symptoms to you to, I also have two units always.
I usually, since the last time in April, where my HB went to 67 oops no it was 63 I made a mistake in that last post., I ended up in intensive care with heart failure and my one kidney failed as well, with very high potassium levels, they eventually got me going again.

However I am now very, very, carefull , and around 41/2 weeks before a transfusion I start bloods, roughly every 3 days just to be sure...The thing i find difficult is not having anyone, other than on here, to bounce ideas off .there is every support group know to man here but not for this.

I was under a physician here who asked me to be his patient, as he had never treated any one with this, I said yes ,but he was practising on me, taking my HB to levels so low, it resulted in that episode in April.
.Have you a specialist taking care of you? I don't for now. I am still low grade and keep a good eye on my counts. I have had 3 bone marrows in total.

I don't have a crystal ball, I wish I did sometimes!
!you have a great week Marylee-jane

[Naive]

Hi Mary - lee,

Yes, I’m under the care of quite a few Specialists. I see my Haematologist every month, my Physician every three weeks, my Neurologist every three months and my Surgeon every three months. As you can see I have a number of other illnesses/disorders as well as the MDS.

My initial BMB showed dysplasia and slightly increased blasts with one cytological abnormality. My next BMB showed dysplasia and the same chromosome abnormality but the blast count was normal and overall the bone marrow had improved. This was without any treatment besides replacement of nutritional deficiencies. So still MDS but improved. All I’ve had was Neupogen injections to raise my neutrophils but I don’t need these injections any more either.

Now all I need is to get off the transfusions and I wouldn’t even know anything was wrong. That is...besides the MS and the intermittent, chronic bowel obstruction due to adhesions (cause of the nutrition problems).

I’m lucky that I also have a very good, involved GP who also monitors my blood results.

All in all I have very good medical care but that took a lot of work on my part and moving on from doctors who didn’t meet my needs or whom I couldn’t relate to.

I can’t stress enough that you need a Doctor who is very experienced in MDS or blood cancers as a whole.

Good luck.

Carol

[Yuk]

Originally Posted by majorindy

Thank you for your replies Ray and Cheryl. My numbers don't look all that bad but I was told I had an increase number of Myelocytes and Dysplasia. Also had mutations of ASKL1 and TET2. Platelets were 45,000; White Blood Count was 7.3; Hemogloubin 12.3; Hematocrit 36.7; Absolute Neutrophil 3.4; Absolute Lymphocyte 2.9; - Interesting that my hemoglobin increased from 11.4 to 12.3 in last 60 days by eliminating coffee. Also take supplements - Vitamin C; B-12; Folic Acid; Vitamin K-1 and K-2; Iron; Daily Multi Vitamin; Vitamin D; and lastly Beet Root capsules which i started again a few days ago. Beet root appeared to work good last February when my platelets dropped to 36,000. Then went up to 65,000. I quit taking it as I was going to the bathroom more at night and feeling a little queasy. It's difficult as you read conflicting information on the internet concerning life expectancy and treatments.

Hi Majorindy, have you spoken to your doctor about possibly having CMML?

[Yuk]

Originally Posted by Yukoner4

Thanks Hopefully, i will take your advice

Hi Yukoner,
Is your hematologist not doing anything for your low platelets?

[cdseibold]

I was diagnosed as intermediate risk 9/12. Watch and wait can be boring which is good. At first I had frequent blood tests and now down to every three months. Blood values have not shown any trends except a slow downward drift of platelets.

Suddenly 3 weeks ago I suddenly was totally unable to function. Sleeping most of the day. A CBC revealed that my numbers had tumbled. After stopping Arimidex my values are recovering.

I was so worried that I had slipped into AML. But bone marrow test shows not a problem with AML. Thank goodness.

But it did get me thinking about the risk of AML and what the symptoms would be. I haven't found any information on the web other than some estimates of the number of MDS patients who develp AML/

Thoughts anyone?

Carol

[Bossywife]

Originally Posted by Yukoner4

Thanks Hopefully, i will take your advice

Hi there Yukoner4! We live in Prince George! (Northern BC). My husband actually works at the Cancer clinic here. Do you see the Doctors in VGH at all?

My husband started out a lot like you. If you ever have questions, please feel free to message me.

Laura