[LibbyC]

Autologous SCT vs Allogeneic SCT

by LibbyC on Mon Oct 08, 2012 2:31 am

I've had both and I wanted to put my experiences up for other people with multiple myeloma. My multiple myeloma had been termed by Drs as refractory (hard or impossible to manage).

I was 43 when dx with multiple myeloma having a paraprotein level (I think this is also know as an M spike) of 67, haemoglobin of 8.4 and a fracture in L4. The CT scan of my lower lumber region looked like a holey mess. Used to an active life the drs told me to take it easy, I thought I was until I fractured 2 more vertebrae L1 and T12. Needless to say I didnt tell the Drs what I was doing, one was digging the potato patch and the other was trying to do Pilates!!

My treatment so far;
4 cycles of VAD with 40mg of Dex for 4 days then a break of 2 weeks (1st time I took Dex I hallucinated and felt like a blowfly stuck in a bottle). Lost my hair and managed to increase my weight by 20%. Man those hunger pains. After this treatment my paraprotein had decreased to 29. As soon as I finished the cycle the paraprotein would start going up again.

I then was on Thalidomide with Dex for 9 months. I was wiser with the dex - would get up at 3 am have a milk drink take my dex and then go back to bed. This helped with the hunger pains and helped with getting a better night sleep the next night. I started developing NP in the feet and lower legs with some slight tingling in the ends of the fingers. My paraprotein had dropped down to 20. The last 3 months on Thalidomide it only dropped from 23 down to 20. The first month off Thalidomide it increased to 24.

The pain (not too bad) in my back was a good indication of how the cancer was progressing - it would ache when my paraprotein was above 30.

My next treatment was an autologous SCT after being myeloablated with melphalan. Supposedly a 2 week hospital stay turned into 5 weeks as I developed a life threatening condition (I am still here, the recuperative powers of the human body are amazing). My lungs collapsed, heart had a few hiccups and renal failure. Most of the time I can remember being incredibly tired and that I had 4 lines in as the Drs were pumping me full of stuff that kept me alive. My husband and 2 gorgeous children (now 9 and 14) still have a wife and mum. What did this do to the cancer? Not much, 3 months after the transplant (this includes the 6 weeks in hospital) my paraprotein was 20.

Enter Velcade. A couple of months passed b4 I could go on to the Velcade, Dex and cyclophosphamide. This treatment consisted of 4 cycles at the end of the last cycle the numbness in my legs had travelled up to my knees and once again I had tingling in the hands (but this was worse than with Thalidomide). In Australia to be eligible for a 2nd round of 4 cycles of Velcade the paraprotein levels need to have dropped by half. Mine went from 29 to 16. Sooo close but the Velcade had stopped working after the 3rd cycle - the paraprotein was 16.

What next? I was told there was no more treatment and to go and enjoy life. We had to tell the children, my 14 year old thought that 10 years was too soon and my 9 year old asked whether I would make it to Christmas (2011). At that stage and the way the cancer was growing I think I would have made it to Christmas and maybe half way through this year.

The reason behind the Drs saying no more treatment was that they could see that the only option for me was to have an allogeneic SCT and the two specialists disagreed on the way my body should be conditioned prior to the transplant. Furthermore most patients prior to an allo had a paraprotein level around 4 -5. Most regimens involve myeloablative conditioning ie the melphalan that nearly killed me when I had the auto. They then decided to try something slightly different and used a low dose chemotherapy with reduced intensity total body irradiation (TBI) to condition my body. I had two perfect HLA matched donors (both had different blood groups to me) somewhere in Washington. THANK YOU whoever you are for being a donor. My paraprotein at this stage was still 16 but went up to 20 2 months after I had the transplant (April 2011). It was very easy, a 30 min infusion.

So what about Graft vs Host Disease (GVHD)? Everyone was waiting for me to show some sign of GVHD. I found it fascinating that I was two different blood groups at once, I was A+ and my donor was B- so I was both. I had to carry a card saying which blood the hospital should give me if I required a transfusion (I have had two - one for the auto and one for the allo). It was at this time that the paraprotein was creeping up abit & the drs were a little concerned. So they weaned me off immunosuppressors relatively quickly - still no GVHD and gave me a few more donor cells. I then caught a cold (I was at a friends 50th, 130 people in a couple of rooms and it was winter - what was I thinking) and developed pneumonia and was hospitalized for 3 weeks requiring oxygen. I quickly developed a rash but the drs didn't know whether the skin rash was GVHD or an allergy to the antibiotics (it was both) that was during the 1st week of hospitalisation. The 2nd week was liver complications, but was this due to all the drugs being pumped in or was it liver GVHD. The liver biopsy confirmed GVHD (stage 3/4). I am so glad steroids (intravenous prednisolone) are available, in one day I went from a yellow eyed orange skinned person to nearly back to a normal colour. I was released from hospital 5 days later.

What about my myeloma? In the time I was in hospital my paraprotein went from 17 down to 8 (3 WEEKS). Since then it has kept on decreasing until it was no longer dectected (April 2012). Unfortunately I have developed GVHD against the fascia surrounding my muscles which has restricted my movement somewhat (I had hypermobile joints previously) but I am currently back on immunosuppressors and the good old steroids. It is manageable and I am in less pain than I was with the myeloma. I will probably always have the GVHD but I am sure that I will be able to manage it with exercise (gentle) and good old immunosuppressors (I stay away from people with colds).

My myeloma is now in remission solely due to the donor vs myeloma effect. This means that there is the potential for other multiple myeloma patients to have an allogenic SCT without having an auto SCT first (eg those patients that dont produce sufficient stem cells).

I am so very grateful to those Drs who dared to do something differently and to the wonderful donor who made this part of my life possible.

[Nancy Shamanna]

Re: Autologous SCT vs Allogeneic SCT

by Nancy Shamanna on Mon Oct 08, 2012 10:19 am

Thanks for sharing your amazing journey, Libby. So glad to hear you are doing better now, and hope that the Beacon will help you to stay in touch too. It's great that there is also now a forum topic for younger patients. This disease is skewed towards us middle aged or older ones, but you younger ones will have your own issues and concerns going forward. It's neat that people have posted in from at least three different countries so far. Good luck to you in Australia!

[alpass]

Re: Autologous SCT vs Allogeneic SCT

by alpass on Tue Dec 04, 2012 11:57 am

Hi
i have had tamden sct back in 2003.never got to a CR.my maintence was a year of pulse dex.never got to CR.the following year no meds,my numbers started to go up.i have kappa flc.put on 25mg rev. no dex.numbers came down and the rev. was given then given to me at 10mg.disease was stable but never a CR.
the beginning of 2012 kappa staterted going up again put on Velcade didn`t work.put on RVD with cytoxin didn`t work.
thinking maybe about allo transplant.
i live in nj but don`t care about travling to the best allo specialist.
any ideas
thanks
Al

[LibbyC]

Re: Autologous SCT vs Allogeneic SCT

by LibbyC on Tue Dec 04, 2012 6:22 pm

Hi Al,

Sorry cant help with allo specialists in the states only know my specialists in Melbourne, Australia. I found it awful when I was put on a new drug and the response to the myeloma was just not as good as the doctors were expecting (the look in their eyes would give it away) so I am very glad that I had the allo. All the best for finding a good allo specialist.

Libby