[pamnParticipant]

Hello. I was diagnosed with Smouldering Myeloma in Dec 2015 and  also that I have P 53 gene deletion which at the time meant nothing . I continued in good health, however in Dec 2016 my para proteins rose significantly and I started VDT with few side effects, but after 4 cycles the levels weren’t reducing and I am currently having my 2nd of VDT PACE in anticipation of reducing the levels to start harvesting stem cells shortly. My Consultants have said that the gene deletion is hampering treatment and my best prognosis is to continue with the first transplant using my own stem cells this summer ,but follow shortly with a Tandem transplant using my brother or a donors stem cells. It is much riskier and I feel unnerved by the statistics . Has anyone any experience /info of both the gene deletion and Tandem Transplant please ? Thanks Pam

[jellytotParticipant]

Hi Pam, I don’t know if I have P53 gene deletion but despite having both velcade and lenalidomide, since September 2015, my light chains and paraproteins are stubbornly high (1000 & 38) . My consultant never mentioned fish, cytogenics or deletions. I asked him about it but he said he didn’t think it was necessarily important!? His response now is to apply to the cancer fund in Northern Ireland for pomalidamide. Has VTD pace worked for you and what has it brought it down to?

[pamnParticipant]

<p style=”text-align: left;”>Hi jellytot,thanks for getting back to me. I am planned to have a final cycle of V-DTPACE starting next Monday , my Consultant is hoping that the para proteins will get below 10 ( not great ) but plans to start the next step for harvesting stem cells anyway and then work towards a Tandem Transplant around Christmas. So to answer your question about whether it’s brought my levels down I will let you know as soon as I’ve had this cycle ( 2 of 2)Have you had a transplant ? Is the pomalidamide an alternative to VTD treatment ? I understand that some therapies work better for some than others and we are all individual but it’s good to know that I’m not alone in having stubborn levels despite being well drugged!!! Good luck with it all.</p>

[jellytotParticipant]

Hi Pam, I had 5 cycles of VCD with no response so my consultant is applying for pomalidomide as I have had 2 previous treatments of lenalidomide and velcade. No word of transplant as nothing seems to work. What’s involved with V- DTPACE? Your consultant is going to keep you busy for the rest of 2017! Given haw much drugs we’ve had Pam, do you think we glow in the dark?? Look after yourself, Jane x

[pamnParticipant]

Hi Jane. Yes glowing nicely and about to start my final cycle of V-DTPACE tomorrow which will add to the glare!! Cisplatin,Cyclophosphamide ,Etoposide and Doxorubicn are given over 6 days intravenously and VTD as injection and tablet. I’m an in patient this week and 2 1/2 hrs from home ,which is tricky ,but having done it for the first cycle a month ago and am less anxious as I know what to expect re side effects, know the routine, Ward and staff better and family and friends will visit. Just hope that it does the job and reduces the scores in preparation for harvesting . Good luck to yourself too. This isn’t easy and not what we thought , expected or planned …….. Best Wishes Pam

[HelenParticipant]

Hi Pam
I have the P53 deletion- as I understand things it means that it’s more difficult to treat and get drug free remissions. I’ve been on almost continuous treatment since diagnosis as a result.
I had a stem cell transplant nearly 6 years ago and was on maintenance revlimid afterwards- most recently I’ve finished pomalidomide after 32 months and am now trying Daratumumab to hold the light chains back.
A donor transplant was recommended as the best treatment for me but unfortunately there is not a donor match. One of our myeloma group has recently received a donor transplant and is about 15 months post graft now – looking good and doing lots.
I think you have to just take the treatment as it comes and hope to get as long a time out of each one. Myeloma treatments are not an easy thing to get your head round and to adjust life accordingly- I’m still finding it difficult!!
Hope it all goes well for you
Love Helen

[pamnParticipant]

Hi Helen, thanks for getting back to me .Sorry for not replying earlier but I’ve been in and out of hospital. Yes ,not only getting your head around having the Myeloma  but to find that it doesn’t respond well to treatment is a blow. How has your health been both with the Myeloma and also responses and side effects of the different drugs ?  I finished having my stem cells harvested yesterday and today has been the first free of medical input / faffing for a while ,with the transplant planned for in 2 weeks time .Hearing that another person is enjoying a good response to a donor transplant is positive as I’m very hesitant to commit at the moment. I’ve had a relatively good quality of health and energy with both the Myeloma and chemotherapy and just don’t want to jeopardise that with the donor rejection statistics . Are the Doctors  continuing to look for a suitable donor for you or are they considering any other treatment options ? That must be very hard for you and  I wish you all the best. This business isn’t what we signed up for ……. Thanks again , you’re first person I’ve met to share the same gene deletion and subsequent issues and I don’t feel as isolated . Good luck .Best Wishes Pam

[HelenParticipant]

Hi Pam
It’s nice to be hospital free for a bit – I went to France for a few days before my sct.
I’ve usually felt and looked the picture of health since I started down this road – and though I’ve had some terrifying infections I’ve recovered very well- if not quickly- it’s vital to keep checking your temperature.
I’d go for a donor transplant like a shot – despite all the risks – if there was a donor- though I’m getting a bit elderly for it now – they like you to be under 60.
Good luck with the sct- don’t forget to suck the ice, take loads of very soft baby wipes, lots of old nickers, and some pads in case of diarrhoea- drink until you think you might float off the bed and make sure the wig is ready for the 9th day post
Love Helen

[pamnParticipant]

Hi Helen. Thanks for the advice re ” hospital musts ” to take in with me . We’re having a few days  away next week before the SCT and glad of a break from both drugs as I  had 2 cycles of VTD PACE in May  and June and appointments . Hope you have luck in finding a donor. Best Wishes Pam

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