Hi David,
That is wonderful news especially as you haven’t noticed any side effects from the Rev.
Will you be doing a set number of cycles?
Megan
Hi Carol,
I can understand your frustration and worry but hang in there. My husband Phil's paraprotein only got down to 5 before his stem cell transplant. It then took another six months for it to get to 0 after the transplant. MM is such an individual disease it is impossible to know what will happen. I know this doesn't make it easy but try and stay positive and remember there are new drugs becoming available that may one day make this a chronic disease. Not everyone gets to 0 even with a SCT but as long as the disease stays stable and does not cause damage to the bones or the kidneys it will be a good result. There are some people who are classified as smouldering with PP higher than 3 so remember the PP and FLC are just two of the things that measure the disease but lots of other factors need to be considered as well.
Stay strong and good luck with the harvest.
Megan
Hello,
I am sorry I can't help with your question as my husband Phil does not have FLC but paraproteins instead. If you would like some advise I would suggest calling the Myeloma Infoline (the number is at the top of this page). Ellen or Maggie will be able to answer your questions and let you know the best place to get more information. If your GP would like you to see a haematologist I don't see that would cause any harm and it may help put your mind at rest about the treatment your immunologist has suggested.
Megan
Graham,
I am glad to read your SCT went well and that you are now home. Remember to take it easy and not try to do too much too quickly, listen to your body and rest when you need to. My husband Phil found that he still got very tired for the first few months after his SCT in December 2012 and even now if he does too much but you will find day by day you get stronger and start to feel better.
Megan
Hi Angela and Richard,
I know in the UK waiting for a bed sometimes delays the SCT for some people but I don't think the fact that it is Christmas will necessarily cause a problem. My husband Phil finished his chemo in October 2012, he had his stem cells harvested on December 5th, 2012 and was admitted to hospital on December 17th for the SCT. He got his cells back on December 20th and was home on January 9th. The hospital was quieter than normal over Christmas but he still received excellent care overall. He never actually got moved to the transplant ward as by the time there was a bed available he was in isolation but the ward he was treated on was fine and used to dealing with SCT patients. Every hospital is different but I am sure at the Manchester Royal Infirmary it will be business as usual over Christmas.
Having said all that waiting until after Christmas is not that long a delay, many people get good remissions from chemo alone without having the SCT, an extra month after your initial treatment has ended is not a long time. Phil's PP levels stayed stable at 5 after his last Velcade injection and after the chemo for the stem cell harvest, it is possible that if he had not had the SCT his PP levels would still be at 5 now.
Good luck to Graham and to you Richard for the stem cell harvest.
Megan
Hi Eve,
It is never too early to start Christmas :-). Last year our Christmas included Phil being in hospital for his SCT so this year we are hoping to enjoy a hospital free Christmas Day. I have started the Christmas baking and have already posted the Christmas presents to my nieces in Canada (last posting day for surface mail was October 15th!) so Christmas is well and truly started for us as well 🙂
Megan
Hi Christine,
That is great news about Chris' PP levels 🙂
Phil still gets tired now 11 months after his SCT and he is not trying to work, I think the fatigue is pretty normal.
How is Chris' neuropathy now?
Good luck with the mini allo, please keep us posted.
Megan
Hi Sue,
That is one of the drawbacks of velcade, so many visits to the hospital! I took comfort knowing that it meant Phil was being monitored very regularly. The other thing about velcade is it may cause peripheral neuropathy which is nerve damage in the hands and feet. At the start of each cycle going forward your husband will be given a form to fill in to track any signs of peripheral neuropathy. Always tell the nurses immediately if your husband develops and tingling, numbness or burning sensations in his hands or feet. Neuropathy can disappear after treatment (and some people never get it) but for Phil his feet still have neuropathy now despite reducing the last two doses of velcade. Phil is able to cope with the neuropathy without taking any drugs but if your husband can avoid it he should. Just tell the nurses/consultant about it if it appears and there is then the possibility to reduce the velcade or take some medication that may help reduce the effects it produces. Hopefully you won't have any problems with this but it is better to be forewarned 🙂
Phil did not really suffer with any other side effects although he did get tired at times. I hope your journey is a smooth one.
Megan
Hi Sue,
Sorry to have to welcome you and your husband to this forum but it is a great place to ask questions and get support.
Will your husband be treated at Bart's? It is very daunting at the start but please feel free to ask me any questions you like about PADIMAC, about Bart's or anything else. It is now 11 months since Phil had his SCT and he is still in remission and doing well, it is a roller coaster but the journey is doable. You can post on the forum or send me a message directly by clicking on my picture and you will see an option on the right to send a private message.
The PADIMAC trial is a good option at diagnosis as it gives you some options depending on the response. We didn't really know anything about anything when Phil agreed to do it but with all we know now Phil is happy it was the route he took.
Megan
Hi Maureen and Ian,
Thank goodness you aren't trying to fit your job in as well, I know it is not the start to your retirement that you would have wanted but hopefully once you get over this hurdle Ian will be home to stay.
Megan
Just bumping this message up.
Hi Richard,
They are very annoying and always wait until the weekend. Stuart from the webteam will remove them all first thing Monday but an idea that was suggested in a previous post on the matter was to bump up non spam entries so people don't see the rubbish on arrival to the site:
http://www.myeloma.org.uk/patient-services/discussion-board/off-topic/spam-on-the-forum/
I am sure if any of your suggestions can be put into practice Stuart will consider them, it would be nice for the forum to stay spam free.
Megan
Hi Jean,
I believe in the UK maintenance treatment is only offered on certain clinical trials and even then there is often a radomisation process to see if you go on the maintenance arm or not. My husband Phil was on a clinical trial but in his case the trial was to see if using velcade as a first line treatment could delay the SCT. In Phil's case he did not achieve a good enough response after 6 cycles so he has had his SCT. He has not been offered maintenance and is now only on Zometa for another year and aciclivoir (this will stop in a month). Phil has had quite a few BMB but this was part of the clinical trial protocols so this also probably differs between trials and between hospitals.
Phil still suffers from fatigue 11 months on from his transplant, he went to bed at 9pm tonight :-). I think the tiredness is perfectly normal.
I hope this helps.
Megan
Hi Jan,
I know what you mean about something different happening every week. Phil was originally diagnosed due to back and rib pain but early on in his treatment he called me at work one day to say they had stopped his chemo and were not going to let him go home as they were so worried about his legs. He was told if he stubbed his toe he could break his leg. We were just getting to grips with everything and this came out of the blue, we didn't realise his legs were a problem! The next six months we seemed to lurch from one problem to the next but things are much calmer now.
Not everyone has a SCT and many blogs and forums suggest that they may become less common as new drugs become available. The main thing is to get the MM to a stable state and keep it under control, this can be done without a SCT.
I hope Mike is feeling better.
Megan
Hi Clare,
You don't say when your Mom had her SCT? I know she was making her decision in May. My husband Phil had his SCT at Bart's in December 2012 and his PP did not get to 0 until July 2013. The numbers can continue to drop for a long time after the transplant but reaching 0 is not crucial, the main thing is that they decrease and then stay stable. I know of people who have been at a PP of 5 or 10 with no further need for treatment as they are stable. How does your Mom feel? It takes time to recover from the transplant but hopefully she will be feeling better day by day and that is the important thing, the PP is just a number and there are many other factors to consider.
I hope your Mom does not worry too much, if her doctor's are happy that is a good sign.
Megan
