[Justine]

A few transplant process / timing questions

by Justine on Sun Dec 01, 2013 6:25 pm

Hello friends,

I have had my high dose of cyclophosomide last week in view of stem cell harvesting today. I became quite sick with nausea & couldn't eat or drink for 3 days so remained in hospital a total of 5 days. I was surprised as I was told by transplant coordinator I would be fine. Back in hospital now as blood counts were low & neutropenic last few days. I am really frightened about the next round of chemo then transplant.

* how soon after chemo pre transplant did you get sick?

* how long between chemo do they "rescue" you with transplant.

Any advice on how to get through this would be great, there is always something that's unexpected that you wish you knew, right

Many thanks, Justine from Australia xx

[Nancy Shamanna]

Re: A few transplant process / timing questions

by Nancy Shamanna on Sun Dec 01, 2013 7:13 pm

Hi Justine, i hope you fell better soon after the cyclosphosphamide used for stem cell harvesting. That is a strong chemo, just as is malphalan, which is used for the stem cell transplant. i lost my hair after the cyclophosphamide, it's that strong, and was in pain from the neupogen shots, which were used to boost the amount of stem cells in my marrow. The stem cells leaving the marrow in more than their usual numbers really hurt! But that was temporary, as I recall (it happened four years ago).

Once the stem cells were harvested, they were stored away for my transplant. I didn't have the transplant right away….I was at least five weeks later. I appreciated having that time to rest up actually. Many people who post on the Beacon have had their stem cells harvested and they haven't yet had an ASCT.

The actual transplant wasn't any picnic, and although I did not have as many problems as many whose experiences I have read about, or from people I have talked to at my support group, it was still difficult.

I was very close to a remission when I had the transplant, and afterwards, on 'consolidation' with Revlimid, I got into a stringent remission, which held for more than three years, so in terms of myeloma patients, I have been very lucky! Are you in a remission now?

Sorry to hear that you are having these problems!

[heike]

Re: A few transplant process / timing questions

by heike on Mon Dec 02, 2013 7:43 am

sorry to hear that about you, Justine, and many thanks for sharing your experiences! Nancy, your experience helps me esp since my brother does not want to consider transplant - one doctor recommending looking into it and the other waiting still. it's hard to find a "right" way. all the best to you!

[Nancy Shamanna]

Re: A few transplant process / timing questions

by Nancy Shamanna on Mon Dec 02, 2013 9:06 am

Hi Heike, I am glad that you could get some help from me sharing my experiences. I really think that one's medical team knows the most about what would work for their patient. I am 'standard risk' as far as my chromosomes go, so that may have been a factor as to why my treatments worked really well. Even four years ago, I think that people were beginning to debate as to whether a stem cell transplant is truly helpful, in light of the new 'novel' agents becoming available. Where I live, the only 'novel' agent available to me at that time was Velcade (plus dex), which I think is a miracle drug actually! Later, right when I finished up my ASCT, Revlimid became available, and I was able to benefit from that too. I think that what I appreciate most from my treatments, after the No. 1 fact that I am now a 'survivor', is that I have had 2 1/2 years away from taking any myeloma drugs or transplants. That could change of course, since the nature of the disease is to shift and change within one's chromosomes, but we just have to work with what is available to us. The best is to have a really good medical team, at an institution that deals with many myeloma patients. Best wishes to you and your brother!

[Joy]

Re: A few transplant process / timing questions

by Joy on Mon Dec 02, 2013 5:41 pm

Hi Justine,
Sorry to hear about your nausea experiences. Did they give you anti-nausea meds? I didn't get sick from the cytoxan but I was given Zofran in an IV that day. Plus, I was sent home with prescriptions for Zofran, compazine and ativan with instructions of how to stagger them and to take them even if I felt fine. After the transplant,in the hospital, I was also given those drugs and was instructed to ask for them even at the slightest hint of nausea. I only vomited a couple of times in the hospital. I'm told that the trick is to take the drugs before there's a problem. Hopefully they will provide these to you at your transplant.
My transplant schedule had 2 days of melphalan followed the next day with my stem cells.

[Justine]

Re: A few transplant process / timing questions

by Justine on Mon Dec 02, 2013 7:07 pm

Hi Nancy & Joy,

My myeloma has not responded well to Velcade enough for the Australian Commonwealth to approve me for more...I went down from 52% to 31% in 3 months which sounds ok to me but I guess not good enough. In Australia we don't have to pay for Velcade if responding well in first 4 cycles...(I was told). I have just had stem cells harvested today & it went well. Interestingly, the transplant coordinator said she feels my nausea was severe from cyclo because it wasn't managed properly,timing wise & I had everything! I know I'm high risk & critical right now based on anaemia & percentage of cancer, neutropenic also. So I'm having transplant or I will die within months. Wish me luck xx

[Joy]

Re: A few transplant process / timing questions

by Joy on Mon Dec 02, 2013 8:02 pm

Hi Justine,
I'm high risk and had anemia and a lot of bone damage. I had 90% myeloma in my bone marrow. I'm about 8 weeks post transplant now, not anemic and doing pretty well. I think you will too. Best of luck. I hope you have smooth sailing. I'll be thinking of you. Let us know how you're doing.

[Nancy Shamanna]

Re: A few transplant process / timing questions

by Nancy Shamanna on Mon Dec 02, 2013 9:00 pm

Hi Justine, I am wishing you all the best and I know you have a good attitude too! Sorry the Velcade didn't work as well for you as it could have. i remember getting kytril by IV for nausea, especially with the Velcade infusions. That controlled nausea really well. I hope that the transplant works really well for you and that you can keep us posted. I think that Revlimid is approved now also in AU? I read that on the Beacon I think .. I wouldn't know much about treatments outside of Canada were it not for this site actually. Possibly if your blood counts are really low you might get blood transfusions…some patients do need them. Take good care of yourself!

[Justine]

Re: A few transplant process / timing questions

by Justine on Mon Dec 02, 2013 11:48 pm

Yes Nancy, I'm currently having my 3rd blood transfusion as I write this., been in hospital since last Friday as blood counts were bad after cyclo week before. Feeling very light headed but better

Gosh Joy, 90%!!!!!!! My specialist said I was critical at 52%! I feel quite melodramatic now
I did ask what would happen if I didn't get transplant now & was told outcome would be grim quickly. Myeloma seems to either move slow or fast....I don't know what other treatments will be available for me down the line & I'm not privately covered with insurance. Don't know if we have Rev on our PBS list yet, it's similar to thalidomide isn't it Nancy?

I wish everybody all the very best coming up to Christmas, hopefully we will still be fighting the good fight as long as we can & be here for each other on this site even though we are continents away xx

[Nancy Shamanna]

Re: A few transplant process / timing questions

by Nancy Shamanna on Tue Dec 03, 2013 10:00 am

Hi Justine, i have to admit, that I find the Australian health care system to be a bit confusing, but I did notice on the Australian Health care site that Revlimid (lenalidomide) is approved in Australia, but has restrictions surrounding it's uses, as does Velcade.

Revlimid is in the same type of drug category as Thalidomide. Thalidomide was found to help in myeloma more than a decade ago. It is an immunomodulatory drug, and it causes the little blood capillaries to shut down, starving the myeloma. It was originally an anti-nausea drug used in pregnancy, but was pulled off the market in 1961 when it was found to cause birth defects. Revlimid is similar to that but seems more effective against myeloma, and causes less neuropathy too. Both of those drugs are made by the same drug company, and the distribution is tightly controlled since there is that risk of birth defects.

Velcade is a different type of drug, a proteasome inhibitor. This type of drug interferes with the 'garbage disposal' mechanism of the cancer cells, causing them to choke on their own discarded proteins, instead of recycling the protein into the component amino acids.

If you have time you could look up these topics in the information booklets available online from the INTernational Myeloma Foundation (IMF). Probably you can get into more conversations with the oncologists if you learn more too! I wonder how much 'wiggle room' there is in your health care system, to work around these stringent regulations?, eg. how many cycles of Velcade are allowed?

I hope that everything starts to turn around for you soon. FYI, I also had about 50% myeloma cells in my marrow at dx, and I wasn't being melodramatic to be really upset about that!