Myeloma Forum | janejarratt | Friends Activity https://forum.myeloma.org.uk/members/janejarratt/activity/friends/ Activity feed for janejarratt's friends. Sun, 26 Apr 2026 13:10:55 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 202d2120ad113c487f65c911dbd6862e Carol Symons replied to the topic Neuropathy after valcade in the forum Side-effects http://www.myeloma.org.uk/forums/topic/neuropathy-after-valcade/#post-127479 Thu, 31 Mar 2016 12:17:17 +0100 I haven’t tried this but somebody on the Australian Facebook group has posted that they have had great success with massage using a moisturiser containing cocoa butter. Might be worth a try and certainly better than medication.

Carol

]]> b5f6e2fd1bce06450cf0252b292e0393 Carol Symons replied to the topic Dads failed SCT in the forum Newcomers http://www.myeloma.org.uk/forums/topic/dads-failed-sct/#post-127478 Thu, 31 Mar 2016 11:53:48 +0100 I have read of other patients in your dad’s situation who gave achieved remission with different drugs after a failed transplant, so don’t despair just yet.

Carol

]]> 9b0d6ccbaf8284460fee70377252b6e6 Carol Symons replied to the topic Colin in the forum General http://www.myeloma.org.uk/forums/topic/colin/#post-123589 Mon, 17 Aug 2015 03:28:02 +0100 Sad, sad news my heart goes out to you.

Carol

]]> 2f013e8223b0ea44929b4422c4b8ef13 Carol Symons replied to the topic New to all this in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-to-all-this-2/#post-123336 Sat, 25 Jul 2015 15:52:31 +0100 That is a wonderful result for your husband’s light chains….stay hopeful as he is certainly responding very well to the drugs so far.

Carol

]]> 18159e8545e3ab0fa2f3d50a994591bf Carol Symons replied to the topic Hi in the forum Newcomers http://www.myeloma.org.uk/forums/topic/hi-4/#post-123335 Sat, 25 Jul 2015 15:44:46 +0100 On diagnosis the consultant said to look at myeloma as a chronic disease, rather than an incurable cancer and that has helped me. I am now 18 months in complete remission after an auto transplant and just coming to the end of a 3 month holiday in Europe ( I live in Australia) so you see, don’t despair as there is life after treatment. I was also…[Read more]

]]> 011e5180046f35cdccc74a3a26603939 Carol Symons replied to the topic My latest Consult in the forum Treatment http://www.myeloma.org.uk/forums/topic/my-latest-consult/#post-123144 Mon, 20 Jul 2015 16:16:42 +0100 Good news…long may it continue!

Carol

]]> 0d1c0db6ff0279e33ad769561767f550 Carol Symons replied to the topic medication after transplant in the forum Treatment http://www.myeloma.org.uk/forums/topic/medication-after-transplant/#post-122946 Sun, 05 Jul 2015 20:23:21 +0100 I was told to take antibiotics and acyclovir for 12 months after transplant, but stopped them at 9 months as I had not had any infections and specialist agreed. Re the immunisation debate….in Australia they recommended a full set of re vaccinations wanting to give me 5 in one day! As there seemed to be controversy over whether to have them or…[Read more]

]]> 7d6f9f4f13a56b45f82f8ca6078fa269 Carol Symons replied to the topic pp levels in the forum General http://www.myeloma.org.uk/forums/topic/pp-levels-2/#post-122945 Sun, 05 Jul 2015 20:07:55 +0100 Hi Sandra
Next visit ask for a copy of your husband’s blood tests. Then you will be able to track paraprotein levels, light chains and because of his kidney issues, creatinine level. I had some difficulty getting my results while being treated at Ealing Hospital, London, but at Hammersmith Hospital, where I had my transplant, they willingly…[Read more]

]]> 8ff7f461cc31a172a88b5082aa9273cd Carol Symons replied to the topic Worried in the forum General http://www.myeloma.org.uk/forums/topic/worried/page/2/#post-122944 Sun, 05 Jul 2015 19:52:16 +0100 Thinking of you both at this difficult time, a time of course that we will all face. Treasure every day with Colin, share your happy memories, remember there are miracles for some. Why not Colin?

Carol

]]> 94f743d9227006f24955b8999acbe858 Carol Symons replied to the topic My 86 year old Mum .. diagnosed with Myeloma - February 2015 in the forum Newcomers http://www.myeloma.org.uk/forums/topic/my-86-year-old-mum-diagnosed-with-myeloma-february-2015/#post-122821 Sun, 28 Jun 2015 08:08:40 +0100 That is so sad, my thoughts are with you. My mum will soon be 87 and on reading your original post I visualise my mum in the same situation. As much as we want our mums with us forever, I know she would not want to suffer and lose her independence, just like your mum. As you endure the next few difficult days, remember the wonderful times you…[Read more]

]]> 798485ec5ba9cc81e505dbcca6cbe8b4 Carol Symons replied to the topic I'm so happy! in the forum Off topic http://www.myeloma.org.uk/forums/topic/im-so-happy/#post-122816 Sat, 27 Jun 2015 15:22:41 +0100 Well done Richard! Great result!

Carol

]]> 21a5c825a9bd1781727a789cbbb1b2ad Carol Symons replied to the topic Zometa side effect ? in the forum Treatment http://www.myeloma.org.uk/forums/topic/zometa-side-effect/#post-122815 Sat, 27 Jun 2015 15:18:30 +0100 Parmidronate stopped after 2 years in Australia, but I didn’t notice side effects except flu like symptoms after the first infusion. For now, so happy to be drug free.

Carol

]]> 069efdd74f9fb482715f8c03b41d8312 Carol Symons replied to the topic Children checked for this awful disease! in the forum General http://www.myeloma.org.uk/forums/topic/children-checked-for-this-awful-disease/#post-122814 Sat, 27 Jun 2015 15:14:37 +0100 And they keep telling us there is no genetic link? My dad had leukaemia so I cannot discount a genetic link. I Can’t convince my adult children to be tested though. The four of them seem to have their heads in the sand regarding my cancer!

Carol

]]> ee257238f0b0854a9a0ea76846d16338 Carol Symons replied to the topic Worried in the forum General http://www.myeloma.org.uk/forums/topic/worried/#post-122813 Sat, 27 Jun 2015 15:02:22 +0100 Vicki what a worry for you and Colin. I do hope you are able to take him home, if that is what he wants, as it is must be very depressing being in hospital. Your sad news just brings it home to all of us, how precious the days are when we are in remission. We must try to enjoy every minute of every day, as we will all face what you are dealing…[Read more]

]]> d739403e3cf7ee140b5f7c1ab674828f Carol Symons replied to the topic My 86 year old Mum .. diagnosed with Myeloma - February 2015 in the forum Newcomers http://www.myeloma.org.uk/forums/topic/my-86-year-old-mum-diagnosed-with-myeloma-february-2015/#post-122812 Sat, 27 Jun 2015 14:48:33 +0100 So sad for your family, but myeloma is treatable so mum nay well improve with drugs. Don’t give up hope yet.

Carol

]]> d05e3cab06d4481eadf57e64e5061f8e Carol Symons replied to the topic Work in the forum General http://www.myeloma.org.uk/forums/topic/work/#post-122598 Mon, 15 Jun 2015 00:24:12 +0100 I was employed at a school and was able to transition back to work both after initial treatment and after SCT. I worked 1 hour a day for a week, 2 hours daily next week etc etc., transitioning to full time in 6 weeks. I just met with the Head and she agreed this plan which was backed up by a doctor’s certificate. Surely it is disability…[Read more]

]]> 5b32ab84a2a302177ee398e92ca07495 Carol Symons replied to the topic Pain I can't get rid of in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/pain-i-cant-get-rid-of/#post-122526 Sun, 07 Jun 2015 16:36:40 +0100 Tm1960 try the Multiple Myeloma Australia Facebook page as there may be others there who can recommend specialists near to you who may be more helpful than the doctor you are seeing currently. You need an explanation for that level of pain.

Carol

]]> d5a2fb13c582df59b7779f1562a427b6 Carol Symons replied to the topic Bone pain in the forum Related conditions http://www.myeloma.org.uk/forums/topic/bone-pain-4/#post-122525 Sun, 07 Jun 2015 16:30:50 +0100 Hi Dusk
I agree with you that treatment should be more tailored to the individual. In London I was only offered the standard CDT. I asked several times at Ealing a Hospital about my cytogenetics but never received an answer so don’t know if it was even done. I had found a trial using Velcade at University Hospital but the consultant at Ealing…[Read more]

]]> 68666470a19bf5d81d44ef0aa1a4503c Carol Symons replied to the topic Bone pain in the forum Related conditions http://www.myeloma.org.uk/forums/topic/bone-pain-4/#post-122516 Fri, 05 Jun 2015 20:42:10 +0100 I have not been offered maintenance drugs after complete remission from transplant. First in London and now in Australia. I do enjoy being drug free though.

Carol

]]> ba06d3b2d8d939b4bdfc21fe1b0bbc42 Carol Symons replied to the topic simon 54 in the forum General http://www.myeloma.org.uk/forums/topic/simon-54/#post-122244 Sat, 23 May 2015 05:14:19 +0100 Post traumatic stress is a possibility after what we go through. I know I was very down about 6 months after transplant but have perked up now. Some people have seen counsellors, maybe that would help you? My family have been little help, I feel they all have their heads in the sand as I don’t look ill so therefore everything is back to normal…[Read more]

]]> bea7195ea5f1446afa0a9ed3bec4b75b Carol Symons replied to the topic SCT in the forum Newcomers http://www.myeloma.org.uk/forums/topic/sct-5/#post-122243 Sat, 23 May 2015 05:02:52 +0100 From what I understand it is better to go into transplant with your numbers as low as possible if you hope for a long remission. No doubt they will put you on more cycles of treatment to beat those numbers down before transplant. I think it is better to do that than have the transplant and have a short remission. My free light chains also…[Read more]

]]> 67e27012a43b940c2e3e37eb38ad1b8c Carol Symons replied to the topic Stem cell transplant or no? in the forum Treatment http://www.myeloma.org.uk/forums/topic/stem-cell-transplant-or-no/#post-122180 Tue, 19 May 2015 10:10:28 +0100 If mum can avoid infections she will not be ill for a year after transplant…a couple of months and you recover.

Carol

]]> b7d1093088d39b0a79c25899c413cb5d Carol Symons replied to the topic Pom cycle 18 in the forum Treatment http://www.myeloma.org.uk/forums/topic/pom-cycle-18/#post-122179 Tue, 19 May 2015 10:07:49 +0100 Kefalonia is one of the islands my July cruise visits….hope I feel as well as you seem!

Carol

]]> 061d9395bda52659ae3c04f01c799c52 Carol Symons replied to the topic Bone marrow biopsy in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/bone-marrow-biopsy-3/#post-121849 Mon, 20 Apr 2015 10:14:51 +0100 I don’t think the biopsy is that bad but I have to say I think it depends on who is doing it. I have had 2 with just a short weird sort of pain that ran down my leg, but the last one was a nightmare….she kept adding more local anaesthetic and went in a few times and still didn’t get a good sample….of course blamed my bones not her…[Read more]

]]> 0db7a2815f236b94c5efc47f55b25a7d Carol Symons replied to the topic Good while it lasted. in the forum Treatment http://www.myeloma.org.uk/forums/topic/good-while-it-lasted/#post-121840 Sun, 19 Apr 2015 10:49:10 +0100 Hi Richard

I do feel very fortunate to have reached a good remission after transplant and maintained it so far. No surfing for me, in fact nowadays I am very careful about going in if the surf is too rough. There is a salt water lake near here and mostly I swim there….no sharks there either…that’s a bonus!

I haven’t had Velcade yet but do…[Read more]

]]> 8ea2ed8dca4f8770c64ea5afede4b593 Carol Symons replied to the topic Zometa and ONJ in the forum Treatment http://www.myeloma.org.uk/forums/topic/zometa-and-onj/#post-121839 Sun, 19 Apr 2015 10:42:01 +0100 From what I read ONJ is usually triggered by an extraction which doesn’t heal. That is why the doctors advise you to have all dental work done before starting zometa. If mum needs any extractions or root canal work done I think they advise waiting another 3 months before starting the zometa as well. ONJ seems to be a particularly nasty thing to…[Read more]

]]> 369d4784cca375d458a7e4c9b80c1ae5 Carol Symons replied to the topic Constipation in the forum Side-effects http://www.myeloma.org.uk/forums/topic/constipation-2/page/2/#post-121827 Fri, 17 Apr 2015 09:55:22 +0100 Prunes seemed to help when I was on CDT….it was really annoying having constipation. For me the side effects of CDT were worse than the transplant!

Carol

]]> f5c53f5316dfc204e1f3fdfcc53dfe45 Carol Symons replied to the topic Good while it lasted. in the forum Treatment http://www.myeloma.org.uk/forums/topic/good-while-it-lasted/#post-121826 Fri, 17 Apr 2015 09:52:21 +0100 Richard
What a darn nuisance! I went through transplant around the same time as you but was lucky to have and still maintain a complete remission nearly 15 months later. I do hope the new treatment is tolerable. You know some research seems to indicate that 20mg dex is as effective as the higher dose, but guess you have to listen to your…[Read more]

]]> 9f8a7256db1d15c7df20e41125bab430 Carol Symons replied to the topic Is this really happening? in the forum Newcomers http://www.myeloma.org.uk/forums/topic/is-this-really-happening/#post-121825 Fri, 17 Apr 2015 09:33:25 +0100 Ali don’t stress, some people smoulder for years! I was working as a secondary SENCo in Southall, London when diagnosed. 2 years later I am heading towards 15 months post transplant in complete remission, retired, living a normal life back home in Surfer’s Paradise Australia. The most hopeful thing the consultant told me when I was diagnosed…[Read more]

]]> 393c2fa92395a68c8f05b6f9db87b48d Carol Symons replied to the topic Birthday Lunch for Stephen in the forum Off topic http://www.myeloma.org.uk/forums/topic/birthday-lunch-for-stephen/#post-121718 Sun, 12 Apr 2015 06:38:46 +0100 What a lovely way to celebrate Stephen’s birthday. He would have loved the flowers!

Carol

]]> 782bb8a72b31e2598c721ae4fbdaf468 Carol Symons replied to the topic FROM DIAGNOSIS TO SCT in the forum General http://www.myeloma.org.uk/forums/topic/from-diagnosis-to-sct/#post-121717 Sun, 12 Apr 2015 06:28:23 +0100 I had my transplant in Hammersmith, home in 14 days and the staff there were AMAZING! I am still in stringent complete remission. Long may it last!

Carol

]]> 97748c1b487a1234575539089720d9c0 Carol Symons replied to the topic alcohol ?? in the forum General http://www.myeloma.org.uk/forums/topic/alcohol/#post-121716 Sun, 12 Apr 2015 06:25:39 +0100 No
Carol

]]> e9864e4bc7bd07f7e6c04cb7929cacdf Carol Symons replied to the topic Myeloma & mucous in the forum General http://www.myeloma.org.uk/forums/topic/myeloma-mucous/#post-121715 Sun, 12 Apr 2015 06:24:08 +0100 Yes I have this all the time and I am 14 months post transplant. I also wake up every morning with 1 blocked nostril. The doctor thought it may be an allergy (I have never been allergic to anything in my life) and said to get an over the counter medicine for allergies. I can’t say that it helped. All day I am continually trying to clear my…[Read more]

]]> 55223612d2a35d0381d35a0338b1ed9b Carol Symons replied to the topic Heading for treatment in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/heading-for-treatment/page/2/#post-121526 Thu, 02 Apr 2015 07:31:15 +0100 CTD put me into remission after 6 cycles, but the side effects did increase as I progressed through the cycles but…we just have to do whatever it takes to beat those numbers down. Hope it all goes well with you. Keep a look out for neuropathy from the thalidomide.

Carol

]]> ea050e835c330b8bc9b02b5ae8d4e685 Carol Symons replied to the topic Myeloma X1 maintenance in the forum Side-effects http://www.myeloma.org.uk/forums/topic/myeloma-x1-maintenance/#post-121525 Thu, 02 Apr 2015 07:25:41 +0100 In my opinion it is an ongoing dilemma. Do we opt for quality of life or quantity? Here in Australia maintenance is not an option but I am happy to be drug free. Whether it is the right decision or not only time will tell, but I have just passed 14 months in complete remission after SCT. Next specialist appointment on Thursday. My week…[Read more]

]]> bf3911ec444e23cb78da7850c8caffa2 Carol Symons replied to the topic Memory Lose in the forum General http://www.myeloma.org.uk/forums/topic/memory-lose/#post-121524 Thu, 02 Apr 2015 07:18:56 +0100 I definitely have a poorer memory and am glad I have retired from my stressful job. For me Scrabble on the ipad and learning Serbian (well trying to) keep my mind active.

Carol

]]> 60f167292a984bd39846ab04f4c02214 Carol Symons replied to the topic SCT delayed in the forum General http://www.myeloma.org.uk/forums/topic/sct-delayed/#post-121459 Fri, 27 Mar 2015 11:55:02 +0000 Beware of extractions if he has been on bisphosphonates

Carol

]]> a1384c4708920d28bf903251e5e6b88e Carol Symons replied to the topic Feeling anxious. in the forum Carers http://www.myeloma.org.uk/forums/topic/feeling-anxious/#post-121377 Sun, 22 Mar 2015 10:53:17 +0000 Best idea is to go into the process truly believing that you have made the right decision and that it will work! Try to keep your husband active even though he will feel pretty rotten for a few days. I took track suits and I think that psychologically changing into them each morning was beneficial to my state of mind. Also took my own pyjamas…[Read more]

]]> 1d1d94f36784bd2a9adb4b7d088c4a69 Carol Symons replied to the topic Lytic Lesion still MGUS ? in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/lytic-lesion-still-mgus/#post-121376 Sun, 22 Mar 2015 10:43:34 +0000 When I was at Ealing Hospital West London I always had to battle the nurse to get a printout of my results, but now I am home in Australia they print them out no problem. I think you should be asking for a printout as it is not just paraprotein that is important. You should be asking about your free light chain ratio too.

Carol

]]> e255cbf27c4a1b80f3b354fe363bb47f Carol Symons replied to the topic Feeling anxious. in the forum Carers http://www.myeloma.org.uk/forums/topic/feeling-anxious/#post-121372 Sat, 21 Mar 2015 13:53:13 +0000 As long as your husband can avoid infections the SCT (in my experience at least) is not that bad. When he comes home he will need to sleep a lot….I was having morning and afternoon naps for quite some time. The nausea and diarrhoea stay around for quite a while but both are manageable with drugs. Food will be an issue for some time as…[Read more]

]]> 92f03a098f858d48d6e93860805dd15a Carol Symons replied to the topic Husband recently diognosed in the forum Newcomers http://www.myeloma.org.uk/forums/topic/husband-recently-diognosed/#post-121327 Thu, 19 Mar 2015 07:39:26 +0000 I also wonder if being vitamin D deficient while living in London contributed to my myeloma developing.
Carol

]]> daf74f0bb550db0590976386fb7f9012 Carol Symons replied to the topic VELCADE AND THALIDOMIDE in the forum General http://www.myeloma.org.uk/forums/topic/velcade-and-thalidomide/#post-121285 Sun, 15 Mar 2015 11:57:10 +0000 Amanda I remember that feeling. Some nights I would have to sit for ages on the side of my bed before daring to stand up as I was so dizzy, not to mention weak. And I was also a very fit, healthy 63 year old before starting that treatment. But….after a few weeks off the drugs I did start to improve except that I still have some neuropathy…[Read more]

]]> 447b000b78b65ea5b104b94372d8a69b Carol Symons replied to the topic Date for SCT in the forum General http://www.myeloma.org.uk/forums/topic/date-for-sct-3/#post-121279 Sat, 14 Mar 2015 22:28:55 +0000 Hoping all goes well. If Ian can avoid infections it is not so dreadful. Yes a few days of nausea etc etc and a slow road to recover your strength afterwards, but so worth it to be drug free. I am coming up to 14 months in stringent complete remission and life is good…long may it last! Gym and swim most days and back to Europe for 3 months in…[Read more]

]]> 8959062af792e0afff77aadbf89e94d3 Carol Symons replied to the topic VELCADE AND THALIDOMIDE in the forum General http://www.myeloma.org.uk/forums/topic/velcade-and-thalidomide/#post-121271 Fri, 13 Mar 2015 10:05:16 +0000 I had thalidomide with cyclophosphamide and dexamethasone for my initial therapy and after 18 weeks I was really suffering with the many side effects. Dizziness, muscle weakness, constipation, neuropathy (which I still have) leg cramps, night sweats and night time incontinence. In fact I think the initial therapy was worse for me than the SCT!

Carol

]]> 1f7009d58f1416c38231c783d47eb4e1 Carol Symons replied to the topic Progress and roadmap in the forum Newcomers http://www.myeloma.org.uk/forums/topic/progress-and-roadmap/#post-121257 Thu, 12 Mar 2015 09:30:24 +0000 As soon as I finished the initial treatment of CDT with a good response, my light chains and paraprotein started rising again, so it was either on to Velcade or SCT. To me SCT was the better option and nearly 14 months later I am still happy with that decision.

Carol

]]> 43c9691d2d0e113ee16162063eb2e74f Carol Symons replied to the topic Heartbroken that he's gone in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/heartbroken-that-hes-gone/page/2/#post-121253 Thu, 12 Mar 2015 08:03:12 +0000 It is just so sad to read these posts. Give your children time and help them to remember the good times they had with their dad. Such a cruel, unforgiving disease.
Carol

]]> 89ec0ab94e900a35fc0c3fe63e951fdf Carol Symons replied to the topic Missing our dad/husband in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/missing-our-dadhusband/#post-121230 Wed, 11 Mar 2015 09:20:10 +0000 Your dad was always so positive, so sad to hear this news. He was just too young to die. This cancer is just too, too cruel. I am sure you have loads of lovely memories to keep you going.

Carol

]]> 0d27b6da1f79551d6dbdf7f9278116c0 Carol Symons replied to the topic B12 and MM in the forum General http://www.myeloma.org.uk/forums/topic/b12-and-mm/#post-121229 Wed, 11 Mar 2015 09:02:09 +0000 I don’t know about B12 but I was vitamin D deficient for some years and wonder if that contributed to my diagnosis. No problems with vitamin D now I am home in Australia!

Carol

]]> 12c94c5a6edebfde14f9665ee3f39223 Carol Symons replied to the topic kappa light chain myeloma with kidney failure in the forum Newcomers http://www.myeloma.org.uk/forums/topic/kappa-light-chain-myeloma-with-kidney-failure/#post-121153 Fri, 06 Mar 2015 05:28:41 +0000 You will find quite a lot of people on here with kidney failure. The free lite test is the most important in your case as it will give you the kappa and lambda free light chain numbers, especially has there has been no paraprotein. Even more important is the free light chain ratio. Ask for all of these results…sometimes takes a week for them…[Read more]

]]> e0924de8f0de15a3403fdfed300daa6a Carol Symons replied to the topic life after the transplant in the forum Under 50s http://www.myeloma.org.uk/forums/topic/life-after-the-transplant/#post-121131 Wed, 04 Mar 2015 11:29:23 +0000 Post traumatic stress syndrome is often a by product of what we have been through. Some find counselling helped. My move back to Australia and endless sunshine and surf have helped me deal with the depression I was struggling with after transplant in London.

Carol

]]>