[pamnParticipant]

Hi Amme and Heather. Hope you are recovering steadily Amme and either home soon or there already.Also good luck to you Heather and hope that your bone  marrow results indicate the levels needed to proceed with the SCT whilst you feel ready ,and want it here and over asap. I can really understand that ,as much as I feel anxious I just want to get it over with now. I’m seeing my Consultant tomorrow and will have the results from my last VTD PACE cycle – previous cycle hadn’t shown a significant reduction in the paraproteins but the Doctor said to still harvest last week whilst discussing a donor transplant at Christmas. About the side effects ? I’ve actually managed the worst of both the VTD and VTD PACE therapies and not had the extremes of fatigue or sickness . Last weeks harvesting was hot and long ( 3 days )but apart from feeling nauseous after an extra drug to stimulate more stem cells on the first and second days ,haven’t had any subsequent side effects this week and we plan a break away next week for a few days just to relax and hopefully prepare a bit for the next steps . Good luck to both you .Best Wishes Pam

[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

[pamnParticipant]

Hi Rob I hope now being home you are steadily feeling stronger. You sound to have a strong and positive attitude and got through the worst period despite feeling grim for a few days. I’m due to have my SCT on July 11th and any advice and positive feedback is really helpful and reassuring . Good luck and thanks. Pam

[pamnParticipant]

Hello Amme and Heather, Thanks for that advice and suggestions for preparing for SCT as I’m due to have mine on July 11th too. Has your skin been sore / dry ? I was recommended Udderly Cream for feet and hands .Feeling grim plus the past few days heat must have been awful. Wishing you both a good recovery and the best of luck in the future. Pam

[pamnParticipant]

1. Hi Greg .  I was glad to read your response to Coffey as I too have the same decision to make about an allo transplant. My initial own stem cell transplant is in 2 weeks but the Doctors are recommending a Tandem allo around Christmas. I have great reservations as the statistics don’t seem good and the after effects sound gruelling if you are unfortunate to have them . As you say though it’s a dice and for some it’s great and others not so. Are your subsequent problems manageable with drugs or do they change and  you have to constantly adjust to new ones? My head isn’t for it at the moment as I do enjoy relatively good health with both the Myeloma and ridden the chemotherapy side effects well so feel I have a good quality of life and nervous about the odds of the allo. I’m preparing as much as I can for the first transplant so hope it stands me in good stead. Thanks again . Also the best of luck to Coffeys son as I know how difficult it is to make that decision. Good luck to you too. Pam

[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

[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

[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>

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