Myelodysplastic syndrome

Lisa58
  • By Lisa58 · January 13, 2013 at 4:30 pm · 18 replies
  • In Living with cancer
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My mother in law has Stage IV breast w/mets to bone. Last week, her onc called and wants to do a bone marrow biospy and metioned the myelodysplactic syndrome. I have researched this extensively and certainly her blood tests indicate it may be an issue, (low red, increased white and irregular cells).

My question is has anyone experienced this and what can we expect from treatments?

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18 replies   

LauraW43

I'm not her, but my dad has MDS. He has abnormal blood counts and abnormal blood cells. But, he is not needing treatment, yet. My understanding is that, first step is chemo and then moving on to possible blood transfusion, if needed, eventually. There is a book called 100 Q&A about MDS

Try this website - http://www.mds-foundation.org/100-questions-answers-about-myelodysplastic-s yndromes/

It's pretty complicated, as far as I can tell, but will have much info for you. if the book costs too much, maybe the onc can get you a copy. I got mine (for my dad) from my onc's resource area.

Good luck for your mom.

LW

LauraW43

Oops- MIL :)

Lisa58

Thanks Laura! I will have to get the book and subscribe to thier site. It will be very helpful. She goes in for her BM biopsy on Thursday and OF COURSE it may take 2 weeks for results. Waiting sucks.

warrior1

Lisa,
Secondary or 'de Novo', MDS is the harder to treat. I have had it..............had so many blood transfusions. The Aredia, Epogen, Neupogen.......eventually have no effectiveness, whatsoever...........once the marrow fails to produce RBC's, WBC's, nor platelets. I was told that a bone marrow biopsy is NOT needed, because it doesn't confirm.......NOR.......rule out this diagnosis. A bone marrow transplant is NOT a procedure that is done with breast cancer (the immunosuppressors knock out the immune system allowing MBC to grow). All the info for a diagnosis is in the CBC + differential. If she's been on chemo with MBC in marrow, THAT is all the info needed.

My marrow has recovered, because of the PARPi, Veliparib. The chemo that must be given, is a slight dose (the only way I get compassionate usage is with the 'doctors chemo' choice....low dose Temodar). I've been on this combo X 9 (28 day) rounds. After round 3, my marrow started getting better.

I don't know if your MIL is BRACA + (?) If so, you may want to look into PARPi drugs. If she isn't BRACA +, she should avoid chemo and only have blood transfusions, until she recovers...............No more epogen, neupogen. That would give her marrow a chance to kick in again.
I hope this helps.
Anita

warrior1
  • By warrior1
  • Reply 3702738 · In reply to 3702454 by LauraW43
  • January 13, 2013 at 6:49 pm
  • Report post

Laura,
Does your dad have 'Secondary' MDS?

Lisa58

Anita-
I have little info on the genetic status. She was diagnosed in Aug 2011 at Stage IV. She had a diffused tumor that metatsized to alot of bone but no soft tissue. She has been holding her own and has had no chemo treatments (Arimidex and Zometa). Her blood levels have been dropping continually for 4 months and have shown cell abnormalities. Her onc says a tranfusion is the last resort. She has been getting monthly Procrit ( now every 2 weeks). She is 69 and probably is suffering chacaxia (lost about 95 punds in the last year) and I doubt they will give her chemo. The research I have done indicates that the older patient doesn't tolerate it well.

Thanks for all the info. I am going to check out your treatments too. I am sorry you even have to deal with it, Please do well.

LauraW43

I would say not. Is secondary because of all the chemos and stuff? My dad has never had chemo.

warrior1

Secondary MDS is from excessive radiation or chemo that cause marrow damage. The complete blood counts drop........and the RBC's that are produced are irregular in shape & size. They tend to be 'stickier' and some clotting problems can arise, because it effects platelets as well. The changes are diagnosed by a CBC 'differential', which is most times done.........whenever abnormal RBC's on the CBC........'anisistocytes', and the grading is with + signs. If it is MDS, the Procrit, and any other 'marrow stimulant' drugs are of no use. The only way to help is with transfusions. The marrow stimulation drugs can make it worse. This IS NOT the same as blood counts dropping from A SINGLE round of chemo. It is a constant decrease that does not rebound even after a month, that only comes up with a transfusion.

My marrow stopped! I had to get transfused 2units every 10 days........and it would just drop again (without any chemo)..........MDS is usually not easily treated. It is a vicious cycle. Since chemo is needed to fight MBC, and MDS is worsened by chemo...............blood tranfusions + becoming cancer free are the 2 things needed to heal marrow.

The tricky thing is that the more marrow stim drugs are given.........the more stressed the marrow becomes...........making MDS worse. If the marrow can take a break, by getting transfusions, the 'rested' marrow MAY recover.

The PARPi (which is not chemo) has been allowing my marrow to recover. I've been on a very small dose of Temodar (antineoplastic)...... only because I can't have access to the PARPi otherwise. So, I take a 'token' amount of Temodar, just so that I can have the PARPi.

I wish that we all had better 'profiles' done. So that we would know which drugs are more helpful. MBC is all so individual. There are lots of non-chemo drugs that are 'target' drugs, which are coming down the 'pipeline'. Hopefully, some of these drugs will work without damaging our hearts, lungs, and/or none marrow.

warrior1
  • By warrior1
  • Reply 3703472 · In reply to 3702845 by Lisa58
  • January 14, 2013 at 1:43 am
  • Report post

Lisa,
Ask her onco..........If knowing she already has MDS, what diagnosis is he trying to confirm? There is no treatment, besides resting the marrow and transfusions. If he continues to give marrow stimulating drugs, her marrow will continue to be stressed.

If he's insisting on a bone marrow biopsy, you can get the sample sent to Rational Thetapeutics or Weisenthal laboratory in California (or wherever else a live assay can be done). They can figure out what chemo WILL work........and rule out the 'duds'. Just a thought. A genetic sample can be done to also check BRACA status.

There is 'magic' in the PARPi drugs. Too bad that the CT cannot use my very impressive response to Abbotts 'pros'. My hope is a 'fast track', so...............others can get access.

I wish GPawelski was around to give some 'backup'.

I hope that all goes well for your mom.
Take care.
Anita

langley10101

Warrior, Just piping in here, do you know if having to have neupogen shots between chemos increases your risk of future MDS? Seems to me, I heard it somewhere along the line....what are symptoms? I imagine fatigue would be one thing? each chemo wiped my neutrophils out to .02! and I had to have neupogen shots each time for 6 'curative' rounds.... now my neutrophils can't even push 2.5 (normal I think is 4).... and its been 7 months since last chemo..... hmmmm.

warrior1

Langley,
According to some literature that G Pawelsky sent my way (a while ago) the bone stim drugs actually have shown to be a factor in stimulating bone mets. It is by far better to receive a transfusion.
The memory in my phone was wiped clean, so.....I've nothing to send you. Because I had MDS, Greg and I had a long discussion.

Some studies are not as thoroughly studied over a long stretch. Therefore, missing the long term effects, that only show up after time has passed. For example: Zometa or biphosphonates in general and their cause of ONJ. Then again, sometimes it is a choice between two evils.......incidences that the treatment can cause the very disease.....that you're trying to cure/fight................Much like radiation therapy causing an osteosarcoma further in the future.

warrior1

Langley,
I found the info:

07-17-2012, 12:33 PM

gdpawel Moderator

Join Date: Feb 2007 Location: Pennsylvania Posts: 2,767

Growth Factor of Anemia Drugs

EPO is a natural substance made by the kidney. It stimulates the bone marrow to make red blood cells (it is literally a "growth factor"). Healthy adults are usually at about 15 grams a deciliter. When normal people take it, their blood gets too "thick" and they die of heart attacks and strokes.

But it now looks as if increasing the hemoglobin level above 12 is very risky with pharmaceutical EPO. Pharmaceutical EPO makes sludgy blood.

The anemia drugs, which boosts patients' counts of hemoglobin (a protein that carries oxygen in the blood), raise the danger of heart attacks, strokes and death at "high" doses. The FDA has said there is "serious" cardiovascular risks for patients who took "higher than recommended" doses of these drugs. Also, patients who don't respond well to initial anemia therapy (hyporesponders) are exposed to the highest heart risks.

These anemia drugs are approved to treat patients whose weakness and fatigue is caused by chronic kidney disease or by the side effects of cancer chemotherapy. They stimulate production of oxygen-carrying red blood cells, which can boost patients' energy and strength. The issue is over the drugs' safety on how big a dose to use to boost concentrations of hemoglobin. The FDA-approved level is doses sufficient to increase hemoglobin to a maximum of 12 grams a deciliter.

Blood transfusions are generally needed when patients slip to less than 8 grams. The adage of some physicians was that if some improvement in hemoglobin was good, higher levels of hemoglobin would even be better. However, clinical trials have shown the drugs can reduce the need for blood transfusions and improve the quality of life when used within the "original" dosing range.

New studies have raised questions whether these drugs might be harming patients. Those study results suggest the drugs may make the cancer worse. One such study published in the New England Journal of Medicine found that patients treated aggressively with Procrit had a higher risk of heart problems or death than those treated less aggressively.

And now there is emerging evidence that pharmaceutical EPO can feed the growth of tumors in cancer patients (it IS a "growth factor" afterall).

A “growth factor” is about twenty small proteins that attach to specific receptors on the surface of stem cells in bone marrow and promote differentiation and maturation of these cells into morphotic constituents of blood. And blood is a circulating tissue composed of fluid plasma and cells (red blood cells, white blood cells, platelets). Problems with blood composition or circulation can lead to downstream tissue (which is made up of cells) dysfunction.

The problem is that few drugs work the way oncologists think and few of them take the time to think through what it is they are using them for.

[url]http://cancerfocus.org/forum/showthread.php?t=294 __________________ Gregory D. Pawelski

langley10101

Thankyou Warrior, I will copy, paste, save, and print this info so I can read it during my bath.... my brain seems to work better there:)

LauraW43

My dad's is not secondary, but he does have the decreased cells, and they are becoming more deformed, not doing their function. He just had a bone marrow biopsy done (don't know the results). He has them periodically to assess progress. he did have a very bad case of pneumonia, which was caused by heart fluid backing up into his lungs! Ewww.

He thinks he might need to start chemo in the next year or so. We will see.

LW

Lisa58

Hey Anita-
Man, you have voiced my very concerns about the BM biopsy. I am not sure why it is being done considering the CBC/Differential. It seems like a redundant test at this point. I have put a call in to her onc about it (she is in FL I am in MI) which makes coordination of tests and care a struggle. Her pharmacist told her that the transfusions may inhibit blood cell growth as her body may not feel the need to produce cells if it has a supplement with a transfusion. Makes sense on its face but she had related it to her pharmacist who offered the reasoning and this did not come from the onc. Researching the PARPI drugs, it MAY be an option for her and I so much appreciate you giving me that option for research. Any direction helps!! I sure want her to get every option that is out there and this site is wonderful for the help. Thanks all.

Lisa58
  • By Lisa58
  • Reply 3706255 · In reply to 3705881 by Lisa58
  • January 14, 2013 at 9:41 pm
  • Report post

Wow, this is enlightening...my mother in law is on the Arnasep...http://www.medicalnewstoday.com/articles/254257.php

warrior1

Lisa,
This has been an issue for quite some time. Greg had an article regarding this issue. It's disgusting.

Lisa58

Yeah, I sure know that the pharmas/medical industry get kickbacks and take advantage of situations to enhance thier wallets. I was surprised to see this level of punitive damage however. I am glad something worked. It needs to happen more often.

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