Hello Ron,
I dont have MM my husband Stephen does. I am afraid i cannot answer your query, although someone else on the forum might. I am sure someone knowledgable will post soon. Alternatively you could give Ellen a call on the help line. She is always very helpful and will explain things very clearly for you.
Best wishes to you and your wife,
Mari
My word Eliz it is a small world, we have been here for about 25 years now, we moved here soon after we got married and both our children were born here. Where are you now?
Mari x
Hi Carole,
I too use facebook, mostly for keeping in touch with my children. After Tom mentioned that Bridget was using FB more than here I added a few people from the forum so i could send good wishes to Bridget. Please add me if you would like, I am Mari Mason and i live in Tunbridge Wells,
Mari x
Dear Dai,
Your words have moved me to tears. I identify completely with what you say, losing that unconditional love that I feel from Steve is unimaginable and my love goes out to everyone who has suffered this loss, and like many of us, is contemplating that loss at some time in the future.
Maybe we should not dwell on this too much, I dont know,
Mari xx
Thank you Ellen, thats helpful, hopefully sub cut velcade will be licenced soon so that everyone can benefit from it.
I notice one of our contributors in Ireland has been having Velcade regualrly for about a year. Does this kind of maintenance treatment get used in the UK, it sounds like a good idea. I am beginning to get a feeling for the economics of myeloma treatment.
Do you know much about carfilzomib, I know, through Dai that the Aspire trial is going on. Is this likely to become a treatment in the near future?
Thanks for all your helpful input,
Mari
Hi Eve,
Steve got about four and a half million stem cells from his harvest which they put back all in one go, so he does not have any in reserve for a second auto graft. In addition because his remission only lasted a year i dont think they will consider it good enough for a second auto so maybe we are clutching at straws asking them to consider a Allo but we will see. We have to stay positive.
Slim is going in for his SCT on Monday isn't he? I remember that ward in Kings so well, the staff are lovely there. I wish you both well as you take this big step,
Love Mari xx
Hi Sarah,
I know what you mean, after Steve's diagnosis i think we both had a bit of a meltdown. His consultant arranged for us to see special oncology counsellors based at our local hospital. We both had different needs at the time, but as a carer trying to come to terms with everything I found it so very helpful. I think when things are tough we manage to hold things together, but after a while and as things get a little better, suddenly the full force ofwhat has happened can hit us.
If your doctor cant help then maybe you could try Macmillans nurses, they might be able to put you in touch with someone.
Good luck and be kind to yourself, you are going through a very tough time,
Much love
Mari xx
Hi Phil,
Sorry to hear about your diagnosis but welcome to the site where I know you will find a lot of supportive and helpful people. My husband sufffers from myeloma and he was seeing a physio when he was diagnosed and when she realised what the problem was she no longer wanted to treat him. The skeleton can become very fragile with this disease. However he has also had various muscular problems and has found acupuncture very helpful. As this is a holistic therapy he found it has also helped considerably withhis side effect from various Myeloma treatments.
I hope you find something that suits you and you get some relief,
Best wishes,
Mari
Hi Eva,
I dont know about the age cut off for an allo transplant or any sort. We would like to find this out. Steve is 55 but considers himself to be very fit and he coped very well with his first SCT even though he only got about a year's remission from it. He is hoping this will be in his favour despite his age. He has two brothers and one sister and is hoping one will be a match. I understand same sex donors are more advantageous. I think that unrelated donors are considered to be too risky by some consultants. The whole things seems a grey area and there is so much we need to find out. I understand that many doctors now feel that an allo transplant is too much of a risk these days, especially as there are so many new treatments available. I hope this helps and i will try to let you know any further information as I find it. Good luck with the rest of your treatment,
Much love
Mari xx
Dear Mavis,
I am sorry to hear you have been have such a bad time lately. I am afraid i have only just seen your post. You sound so positive despite your problems and I am sure your doctors will get things back onto an even keel for you as soon as possible,
Easter has come and gone now but i do hope you had a happy and peaceful time and you are feeling better now,
Love Mari xx
Hi Jean,
sorry to hear Frank is having concerns with his blood results. White blood cells and more specifically neutrophils are the cells that fight infection. These levels are the ones most closely watched after a Stem cell transplant. Frank's medical team will be concerned because his neutrophil levels are beginning to look rather low. Look in the information section of the website for the normal ranges, sorry I can't remember them exactly, but i do know that below 0.5 for neutrophils is considered to be neutropenic and this will put him at risk of infection. If I were you I would call the consultant or your lead nurse if you have one to check on any precautions. It is possible that Frank may be susceptible to infection and it might be as well to avoid contact with a lot of people until his neutrophils are up. However I do know that these levels can change very quickly, especially if one is fighting an infection of some sort. As for waiting 8 weeks for a scan, I dont think that's on. I would be stamping my foot if I were you!
I hope you both keep well and can get to the bottom of this soon,
Much love,
Mari x
Hi Jill,
Sorry I have only just seen your post. My husband Stephen is just starting his 5th cycle of sub cut velcade. He has been having two injections a week, Tuesday and Friday and dexamethasone on the day of the injection and the day after. He has had very little in the way of side effects from the velcade but does notice some from the dex. The dex picks him up but drops him down when he comes off it so Thurs and Sunday are low days with much less energy.He has not experienced the absolute exhaustion he experienced with CDT in the latter cycles. He has been able to work, commuting to London on non hospital days and working at home on the days he is having treatment. He is a great deal younger than your mum of course, 55. He has managed to cut down the time of his hospital visits by phoning ahead to check the drugs are ready. They are happy to accept the blood test from the previous treatment day to prescribe the next lot of drugs. This will not be so easy of course if your mum is only having weekly doses. The treatment has proved very effect however, pp down from 23 to 12 after two cycles, and we get the new pp levels on Wednesday.
If there is anything else that would be helpful, please let me know and in the meantime i hope the treatment continues to go well for your mum and provides some good results,
Much love,
Mari x
Goah sorry folks, did not mean that to be such a long post
M x
Hi Eve,
Sorry when I read this back it sounded very grumpy, I think I spent too long this afternoon struggling with some work that would just not work out!
Thank you for asking. Stephen is doing ok. He has just started cycle 5 of velcade, which he hopes will be his last. After two cycles his pp had dropped from 23 to 12, so he is hoping he is nearly in remission now. We have an appointment with his consultant locally next week to see how he is doing, and then he is seeing Prof Schey at Kings to discuss the next steps. He has three siblings so is wondering if they will consider him for an allo graft, but there are a lot of issues to consider around that. I was interested to hear that Jet is going for one. The pattern his MM seems to follow is one of good response to treatment but only relatively short remission.
The velcade has gone very well, with very little in the way of side effects. As he already has a fair bit of peripheral neuropathy from the spinal compression,so we were particularly worried about this. We were very firm about wanting subcutaneous Velcade and he has had it. Our lead nurse at Kings told us they do it fairly routinely now and that was enough to convince our consultant in Pembury. We were surprised to learn that it was only licenced in the US in January. Anyway it has worked very well for him. Thank you Dai for bringing it to the board and alerting us to the possibility.
I dont tend to post much about us unless I think it might help someone else. Sometimes it does not feel right claiming too much attention if i am not here often enough to provide my fair share of support as well.
I am glad to hear that Slim is doing so well. I am sure that makes life easier for you both and you can comtemplate a easier future for a while. I am very sorry to hear that your grandson is not so well though. I hope that things will be better for him and your daughter soon. I know how difficult and stressful family illness can be. My dad was recently diagnosed with fairly advanced bowel cancer so I have spent a fair amount of time travelling up to North Wales to see him of late, while we wait for his operation. That is pretty much all my news. I do pop in from time to time and I keep up with how you are all doing. I think of you often, especially those of you going through tougher times, especially Dai and Bridget. And I am pleased to see all of you continuing to do well, Tom and David, whilst others are coming out the other side of affective treatments, as Slim is. I am a bit worried about Gill and Stephen, but I think the last I heard was more positive so i hope that continues.
We just spent a week in Lower Town,Fishguard, Cwm Abergwaun where Steve and his friends spent a few happy evenings jamming in the Ship, so Dai was very much in my thoughts then.
Anyway much love to you all,
Mari xx
I will always be very glad that I found this forum and all of you here. I dont contribute very often because there are times when I dont feel i have anything useful to say. If I can offer support I do. I am very grateful for the support we have been given when we have needed it and would not want to think I was 'cutting and running' taking the support but walking away in the 'good' times. I am sure this is sounding all wrong, I am truly grateful and would wish to support everyone else as we have been supported, but at times I find it very difficult to find the right words,
Mari
