https://forum.myeloma.org.uk/members/pamn/activity/ Activity feed for pamn. Sun, 12 Apr 2026 06:55:24 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 082b464cf48dd6ae82e979b7089b432b https://www.myeloma.org.uk/forums/topic/advice-please-first-sct-in-july-in-tips/#post-134073 Thu, 29 Jun 2017 21:48:54 +0100 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…[Read more]

]]> b4e9aa88156daaa46e493e38db983484 https://www.myeloma.org.uk/forums/topic/anyone-with-p-53-gene-deletion/#post-134069 Thu, 29 Jun 2017 21:17:15 +0100 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

]]> 61f43328ce58e5dae44390dfc0bcfe7c https://www.myeloma.org.uk/forums/topic/just-been-diagnosed-2/page/6/#post-133966 Sat, 24 Jun 2017 06:49:35 +0100 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

]]> 38eaf426c84f049298e1571c494efcb3 https://www.myeloma.org.uk/forums/topic/advice-please-first-sct-in-july-in-tips/#post-133965 Sat, 24 Jun 2017 06:38:11 +0100 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

]]> 8b6cf31f20430badc3125ac64f1727c4 https://www.myeloma.org.uk/forums/topic/transplant/#post-133960 Fri, 23 Jun 2017 12:18:43 +0100 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…[Read more]

]]> 86f4196fb9f708e69b260ed0c2fb5b52 https://www.myeloma.org.uk/forums/topic/anyone-with-p-53-gene-deletion/#post-133959 Fri, 23 Jun 2017 11:54:01 +0100 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 f…[Read more]

]]> 6b751796ee50060ecfefe36d84153a05 https://www.myeloma.org.uk/forums/topic/anyone-with-p-53-gene-deletion/#post-133664 Sun, 04 Jun 2017 06:03:27 +0100 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…[Read more]

]]> e22b024cafe1e57b65ae1d4a0c55e80e https://www.myeloma.org.uk/forums/topic/anyone-with-p-53-gene-deletion/#post-133657 Thu, 01 Jun 2017 19:00:22 +0100 <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…[Read more]

]]> b287b3e086e64c2d63981b57475ae93a https://www.myeloma.org.uk/forums/topic/anyone-with-p-53-gene-deletion/ Wed, 31 May 2017 07:23:24 +0100 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…[Read more]

]]> c98b78d4b00ef0be7a915420f073b4ee https://forum.myeloma.org.uk/activity/p/49921/ Wed, 31 May 2017 06:59:29 +0100 0