What is involved in supportive care?

[knocksonce]

Oncologist believes that MDS is progressing. Based on

1. my husband still in hospital form 4/21
2. development of neutropenia when WBC have never been worse than marginal
3. platelet count worsening rather than rebounding 1 month post-chemo
4. development of unexplained high fevers and occasional unexplained diffuse pain

he believes that if it has not yet progressed to AML, it is very close.

He feels that it is too risky to do another round of Vidaza, since my husband's counts are still low and the last round ended with hospital admission. He discussed other treatment options, such as standard induction therapy for AML but at a lower dose, or transplant, but the risk is very high and the odds of remission very low.

My husband has decided on supportive care, but has not yet communicated that to anyone other than me. Given that decision, they will probably release him from the hospital soon. The oncologist has patients that have lived for years with transfusions, but when pressed admits that the secondary MDS/AMLs tend to be "nastier" and more aggressive and my husband may have months rather than years.

He has had 6 daily Neupogen injections. We will ask about Neulasta.

Other than frequent counts and transfusions as needed, what have people used as supportive care?

[Neel]

Seems we are in the same boat. My father is in hospital since 14 april due to fever and low counts. The doc says the same thing that disease is progressing. He requires transfusion of platelets every alternate day. Seems his fever due to infection is under control, however he hs now develeloped fever due to disease , as the fever goes away after sweating on its own, without taking paracetamol. Previously he has to take 4-5 paracetamol in a day to control the fever along with anti fungal abnd antibiotics. However the main concern now is his platelets. We have tried revolade without sucess and thalidomide is not working now. He is not taking any medicine since last 5 days. Doc is suggesting trying decogen as last resort. We are in a fix now. Trabnsfusing platelets every alternate day is neither feasiable nor practical. Trying decogen is also full of risk. But sooner or later we might have to chose our poison.

All the best

regards,

neel

P.S. :- Any suggestions are welcome.

[knocksonce]

This is a very scary time. I think you mean Dacogen? I think for my husband the risk with Dacogen would be as high as with another round of Vidaza. Your father's circumstances may be different though.

I thought I read that Thalidomide is for RBC production rather than platelets? Did it help with your father's platelet counts in the past?

My husband's fever comes every few days, spikes suddenly to 102-4, and comes down with Tylenol. All blood and urine cultures are negative. In between he goes for 2-3 days with no fever at all. The oncologist sees that as consistent with AML.

My husband has been getting platelet transfusions about every third day when he goes below 10,000. No one has told us that's not feasible. How low are your father's platelet counts? Since this is a new path for us I have to ask, why are every other day transfusions not possible? Is it a supply issue? Or is your father not tolerating the transfusions?

That brings up another question too. Are there growth factor medications like Neulasta for platelets?

[Neel]

Thalidomide forked ok with my father, he remained transfusion independent for 10-11 months, and the results were seen after arnd 15-20 days of starting of thalidomide.

Nobody (as far i have discussed with doctors and patients) knows how and what thalidomide do. Its different result for each patient. for some it might only benefit RBC for some it might help all the cell lines.

In our conuntry only decogen is available, vidaza is not available. Therefore the only recourse/option available is dacogen. The only difference is that you had experience with vidaza, we have not any with dacogen. what effects it has can be seen only after starting dacogen therapy. It might improve the things or might might make them worse, but we still are in worse position therefore we might have to try it in sooner than later.

My father didnt had much fever episode in last 1 and half years since diagnosis. Though at the time of diagnosis he had infection and high grade fever and the ctreating doctor said that fever is part of the disease and he will have it. we thought it is life long fever, but that wasnt the case. it was fever due to infection and settled after antibiotics. this time too the doctor said the same thing, all cultures but negative, but second openion other doctor said that the fever due to disease do not generally cross 100 F therefore it must be due to some or the other infection. All cultures were negative/sterile. Therefore the doctor advise that it might be fungal and heavy dose antifungal were gicven and the fever has subsidized but low grade fever is there which goes away on its own. We think that this fever, which goes away on its own without paracetamol might be due to disease.

At present he is still hospitalised and therefore we are managing platelet transfusion every alternative day. but Platelet transfusion every alternative day is very cumber some as we have to arrange for donors and also when we bring him home they have to be regulalry monitored and needs pricking to draw blood and to inset canulla means it is really torture. My father is already very afraid of this daily pricking of niddles. My fatehrs count drops to 2000-3000 every alternate day. Moreoevr the platelet transfusion are not giving much of effects s even after 1 SDP they increase from 3000 to 18000. Ysday we gave 12 RDP and today the platelet raised from 18000 to 33000.

Neulasta as far i know is for WBC. For platelet there is revolade, which in our case didnt showed any positive results. You can try revolade and hope it works.

As far my understanding of the disease goes, the quantity and quality of life is totally dependent on WBC and platelets. Prognosis as well as quality of life is markdly better if a person is having stable and better WBC and platelets. The person whose WBC and platelets are affecetd greatly do not have good prognosis and quality of life. Though it is my personal opinion being a caregiver to my father.

Hoping and parying for you all and for my father.
God Bless
regards,

Neel

[bebop]

supportive care is blood and platelet transfusions mainly. that is what my dad did for just over a year.