[pjollopParticipant]

Hi, Here is a link to a video of Q & A's with Dr Jim Berenson.

Some health warnings:
1. He is in the USA
2. He is a leading expert and he has his own views on how treatments are used and which to use. There are other experts with different views.

http://goo.gl/GAx0g

[scott9Participant]

Many thanks for that. Its always interesting to hear his views. I opted out of the stem cell transplant when I completed my treatment last month. Its good to hear that Dr Berenson still leans towards maintenance therapy as an alternative. I will see how that goes for me.

All the best

Scott

[eveParticipant]

Hi Peter and Scott
Very interesting from Dr Berenson,Trying to find all the information i can,to try to understand the going down sct or not.!!!!
My husband Slim has just finished 6cycle of ctd,it looks if they will not be recommending sct,because of his lungs,when he had septic pneumonia,the cat scan showed mass blood clots plus wedge shape holes.:-P
We will still go to Kings ,but the consultant,just wants to do nothing and wait until it comes back!!!!seems to have gone off Myeloma x1 trials,which says we should be chosen for treatment or no treatment computer decides!!!!
He can come off trials any time.

How did you make this decision Scott,did you have any facts or figures to go on????would be grateful for any help.Best Wishers Eve

[scott9Participant]

Hi Eve,

My consultant, Dr Schey, told me that as my kidney function is down at about 15% I had a much higher mortality risk (about 17%-18%) if I went through with SCT. He also told me there was no guarantee it would definitely extend the remission period further than maintenance therapy would. I had already seen from this website that others (including Jo, who signs on as Badger)had not taken SCT so it is not a must do. Plus the SCT process sounds horrible and I've had enough suffering these last 9 months or so. I want to get back to some sort of normality if at all possible. Not easy with partial neuropathy in feet and hands plus feeling very tired and needing regular blood transfusions etc etc. At least I have a good excuse now when I do occasionally try to hit a few golf balls!

This is a very individual disease and everyone has to make their own decision as to what is best for them. It's a bit of a gamble, but as we have discovered, thats what life is all about.

Good luck to you and Slim.

Scott

[BADGERParticipant]

Hello Eve

I chose not have an SCT as my kidneys were also very damaged apart from the higher mortality rate the chances of the chemo destroying my kidneys so havineg to go on dialysis three times a week for the rest of my life I decided to take a chance and just go with maintenance upto now i have been ok Hope Slim is ok give him my regards

Love Jo

[BADGERParticipant]

hi Scott
glad to hear you are ok I felt quite tired when I finished CDT and had reguler blood transfusions for at least eighteen months after I was first diagnosed I believe a lot of this is to do with the lack of kidney function
but the good news is I havn't had one for nearly a year now so things do get better i still have a bit of PN in my feet but that also is not to bad
just a bit of numbness in my toes;-)I have pemidrinade(bone strengthener) once a month again a reduced dose 30mgs due to the kidney damage again
Keep Well
Love Jo x

[BADGERParticipant]

Hi
I think James berenson have a lot of very intering things to say I have been following his post closely as I have not had an SCT, what he says encourages me a lot
Regards Jo;-)

[eveParticipant]

Hi everybody
i went through all his work,the arsenic and vitamin C one,impressed me,the patient concerned was given 2 weeks,and he was still alive 6 years later,he summed it up,he was keeping him on top of the grass LOL.
he seems to trying lots of different combinations with different drugs,
Anyway Jo Off to hospital today for bloods,and made appointment to see Myeloma Trials People,to try to make some sense out of last visit.:-S
Must admit to feeling down,it,s Sarah bad news,so sad.
best Wishers Eve

[mhnevillParticipant]

Hi everyone.

I found Dr Berenson's interview very interesting, particualrly as i have always said i wouldn't want to go down the road os SCT – because of my age and other non MM health issues, BUT mainly because of quality of life issues.

However, it was interesting to have seen this interview at this precise moment. Reading Jet's Blog of her SCT has almost made me feel maybe I could do this! Not heard from jet today – do hope she is still keeping OK.

As my PP was 12 least Hospital visit and everything else was stable, I am hoping not to have to make this decision, or to start CTD for a good while.
I feel almost mean saying this when so many of you are going through so much.

I am now taking iron tabs twice a day, courtesy of my new GP, and continue to take Bonefos. However I am wondering if I should be asking to go onto Zometa. Anyone any views? I read it is the NICE recommendation for newly diagnosed MM patients.

I can't believe it is eleven months since I was diagnosed and I wouldn't like to do those eleven months again with the spine operation and radiotherepy, but, having said that, I went to the funeral of a dear friend yesterday, who was younger than me, who was diagnosed with oesophical cance after me. There is no telling in life.

Although I'd rather not be a member (!!!) you are a marvelous bunch. I had the strange experieince of going to a service at a healing well a few weeks ago, in Thornton in Craven, while taking the water i prayed for you all.

Thursday I am taking a small service of Holy Communion, from a perching stool. This will be the first time since I had to retire as Priest in Charge in Steeton, North Yorkshire two months ago and return to our adapted bungalow. I will be holding you all in my heart at that service.

Love and best wishes to you all.

Mavis x

Mavis

[BADGERParticipant]

Hello Mavis.
I also chose not to have an SCT I dont regret it
I go to the EUCHARIST every week at St Albans abbey I pray for everyone
of my cyber friends
God Bless Jo

[pjollopParticipant]

Hi Badger and all. I did have an auto sct despite having poor kineys. They gave me the Melphalan over 2 days instead of 1 to help the kidneys. (I did tell them that I didn't want to end up on dialysis for the rest of my life and they adjusted drug doses to take account of my wishes)

It was a rough month, and a 3 month return to strength but the Myeloma has been dormant and invisible for 18 months now (I am only on Zometa as I have 4 compression fractures of the spine)

I just find it interesting that there appear to be two opposite attitudes to treating Myeloma.

1, Hit it with massive doses of everything you've got. (The nuclear option)

or

2. Start with the smallest dose. Increase it till side effects appear then reduce slightly and hold. (the Berenson option)

I have no idea which avenue is the best – but need to watch the debate. It is reflected in so many things like : Do we give Velcade intraveneosly with the side effects…or subcutaeneosly (with less chance of side effects) So the Nuclear or Berenson approach is evident in every facet of our treatment. Since most of our treatment in the UK is dictated by NICE I am waiting to see which camp they decide to follow.

[BADGERParticipant]

Hi
thanks for your reply how badly were your kidneys damaged did it take you a long time to recover from the SCT what sort of state are your kidneys in now I would be very interested to know if they are more damaged now after the transplant

Kind Regards Jo

[pjollopParticipant]

Hi, Kidney function was very low requiring dialysis. My general recovery from the auto sct – and indeed the kidneys – took 3 months of constant improvement in strength and appetite. The really tough time was when I was in hospital having the stem cell transplant…but when look at that against the 18 months of quality life I've enjoyed since, I [u]personally[/u] think it was all well worth it. But each person must make their own decision since they are going to have to live with the results.
keep on keeping on folks!
Peter

[Author]

Posts