[triggerParticipant]

Hello all,

I am writing to see if anybody could advise me on my mother’s situation.

She was diagnosed with Myeloma in December and has since been doing chemotherapy, which is going well, with her blood protein level reducing well. She sometimes feels tired but generally speaking the side effects aren’t too bad: she is still walking, cooking, cleaning etc.

We are now looking at what the next step should be when she completes the chemotherapy in April. I have read about the benefits of having a stem sell transplant and wondered whether it would be beneficial for her to have it.

She appears to have been frightened off by her NHS doctor, who says she will be poorly for a year and will ‘only’ get an extra year clear of remission.

She said something about there being a ‘cut-off’ at the age of 65, which she reaches in June.

Now, I know budgets are tight so I am not sure if the doctor is scaremongering so they don’t have to pay for Mum’s treatment, or if it will actually be of no benefit.

My hunch is that it is the former. Mum has always been slim, healthy and active. She barely touches alcohol and doesn’t smoke. The way she has responded so positively to the chemotherapy suggests to me that she would be strong enough to cope with SCT. However, she has got it into her head that she is not strong and that she has only had a moderate level of chemotherapy, which is why she has been okay on it.

What do people think? Would SCT be worth it? How much longer remission does it give on average? Does it really make you feel ill for as long as a year?

My second question is what happens post remission when it eventually returns. Myeloma is non curable so it will come back. Mum has been told that when this happens they don’t put you on chemotherapy again but simply ‘control’ it through drugs. Is this always the case and, if so, why? Can you not do chemotherapy a second time?

Thanks you so much in advance for your replies.

[jmsmythParticipant]

Hi Trigger

Sorry to hear bout your mum. Others will be along who have more experience than me but I will tell you of Frank. He had his STC in Match 2013 one month before his 70th birthday. It was no picnic but he got through it. He’s also like your mum “healthy”. With Frank it’s only now he is coming back to himself. Even though we still had holidays last year and he had real good days and some not so. Everyone is different, I think Tony bounced back quite soon. As for the length Tom had four years drug free remission. He has just relapsed and is going for another STC. Frank won’t be able to have another SCT. We are in Belfast and his consultant told him that cut off was 70. But she told him when he relapsed there are more and more drugs coming on line. There are quite a few on the forum who sis not opt for STC for one reason or another and are controlled by drugs. It is a big decision to make and others will be along who will be able to give you more info

My best wishes to your mum
Jean

[triggerParticipant]

Thanks Jean. Appreciated.

[jmsmythParticipant]

Trigger I forgot to mention after 100 days he had all tests including PET scan and is in complete remission

Jean

[dickbParticipant]

I don’t think the medics base all decisions on cost even though the bean counters will want her consultant to. If she is responding well to chemo and the consultant believes she is going to have a full or almost full remission then SCT might not be necessary. Only your mother’s consultant will be able to make that decision. The other point is that MM is different for everyone and if their concerned your mother might not be able to tolerate the very harsh chemo before SCT and then the SCT itself then that will affect their decision. They ultimately look at the risks involved against projected improvement in quality of life. It’s not easy for the medics because it’s got to be akin to looking into a crystal ball. Hope that helps.

[eveParticipant]

Hi Trigger

It is very much an individual choice,and it is your mums choice,I would advice that you get a second opinion ,65 is not old.
You do not say what Myeloma your mum has,or what damage she has,or if it’s effected her kidneys these are very important in any decision she makes.

My husbands consultant advised us to go to Kings and speak to the experts,he did not think it was advise able not because of age but lung damage through clots,Plus kidney problems early on. Kings said yes to SCT.

For my husband it was not worth it,it takes a good 6 months to recover,and he only got 6 months remission,but know one knows what the out come will be!!!!!!!
What ever remission someone gets,you can half it next time,on average.
Some people do not have SCT and get good remission!!!!!
There are no fixed rules on this roller coaster ride,the only rule is it will return.Eve

[triggerParticipant]

Thanks for your feedback. I really appreciate it.

Mum’s Myeloma is restricted to one area of the back. It hasn’t spread and has caused no damage elsewhere. It appears that she is responding really well to chemotherapy and, half-way in, there have been no setbacks. When it was first diagnosed she said decisions were made by consultants as a group, rather than in isolation. I am not sure if this is the case this time.

I would really like her to get a second opinion if nothing else.

As for the second question: does anybody know what the procedure usually is when it returns? I know I am (hopefully) looking a fair way ahead, but is a second bout of chemotherapy simply dismissed, as she has been told?

 

 

[eveParticipant]

Hi Trigger

The best thing you can do is ring Ellen on the free number above 9 to 5 weekday she can answer your questions,the reason I say this is some of your mums information plus yours seems in correct,but I could be wrong.????

My husband has had the following treatment CDT CDV and CDR these are the three chemo,s that NICE allow if not on trials if on trials there could be a number of treatments,plus some treatments can be tried again
Myeloma is a blood cancer and should be treated by a haematologist.any answers to your questions would be second guessing,Maggi or Ellen can put your mums mind at rest,you can phone or your mum,they are easy to talk to,and can save you all this worry,provide booklets,all sought,s of things. Eve

[BADGERParticipant]

hi Tigger
I think you mum has had some poor information there are several treatments that will be available to her I have not had a stem cell because of renal damage first treat I had was thalidomide and DEX I got over 3 and a half years remission had velcade treatment last year finished last September which again has put me in remission again I hope I get a long time off again there are at least 3 more drugs along the line for me so I would advise you to get another consultant I was 61 when diagnosed you need better advice
Regards Jo

[CarolsymonsParticipant]

I am 64 and in hospital at day 10 after stem cell transplant. I chose SCT as I hope to have some years of drug free remission, but it is a gamble…little is predictable in myeloma world.

After I completed 6 cycles of CDT successfully, it was only 3 weeks later that my paraprotein returned. If I didn’t do SCT I would have been moved straight into Velcade…so more drugs which really destroy my quality of life.

Carol

[tomParticipant]

Hi Trigger

Well I had a sct in 2009 yes it was a bit of an uphill struggle at times but for me it was a doable and you know your Mum better than most, most people differ in how and what they can and do achieve, My SCT gave me 4 year drug free and that I am grateful for .

I have decided to go down the SCT route again as I think as it worked once I now know what I might go through again and am ready for it.

They have other routes for your Mum to go down rather than a SCT and your Dr and or consultant should talk Her through it.

Good Luck to you both on whatever route is taken

Tom Onwards and Upwards x

[DizzylizParticipant]

Hello Trigger,

I’m a carer for my husband kev,he was diagnosed August 2010 aged 55, after 6 months CDT went on to have sct march/April 2011 but only got 7 months compleat remission and been on velcade/ dex and now on rev/ dex and stable or plateau’d for the last year!

Sorry to hear about your mums situation but has your mum been given access to a myeloma nurse? Who from our own Experiance helped with all our questions and concerns, even now it’s who I would ring for advice as well as I’d echo what eve said and contact Ellen at myeloma uk.

As you can see there are a lot of different options in treatment and I hope you can soon get both you and your mums concerns a lot clearer as to which treatment is best.

Best wishes to you and mum. Liz & kev xx

[VickiParticipant]

Hi trigger

Would just like to echo what the others have said….it is always a gamble because everyone’s mm is an individual condition. My partner was diagnosed at 56 and had an sct in November 2012. Fingers crossed so far still in remission. I would say that each persons journey through an sct is also individual.

If your mum feels she can go for it then do so. It’s worth a try. We were scared throughout and it’s hard at times but every life line is worth a shot x

Vicki and Colin x

[triggerParticipant]

Thank you all for your advice.

I will seek some further expert advice to see what would be the best route to take.

At the end of the day it is her decision and I have to respect that, but I just want her to have more options open to her than seems to be the case at present.

It is fantastic that this website and messageboard exists.

Thank you.

[mhnevillParticipant]

Hi Trigger

Welcome to you and your Mum!

I’m another one who didn’t go for a SCT by my own choice. I didn’t want to gamble quality of life for what could have been a short remission. About 14 months after diagnosis I had six lots of CDT and fortunately got into full remission (now 18 months and counting.)

It is a very personal decision about SCT. Some Consultants are not doing them for younger patients because there are now many more options.

Best wishes.

Mavis

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