Tom,
I am so, so sorry to read this, there are just not words for it. Like it all isn't hard enough.
Megan
Hi Anthony,
It is all a bit confusing with all the medical jargon and different blood test numbers. There isn't a scale for paraprotein, it is just one of the things that are used to diagnosis Myeloma and track the disease. Other factors that are looked at are bone damage/lesions, the percentage of plasma cells in your bone marrow, light chain results if this applies, kidney function and a myriad of other things. You will learn what applies to your situation and then you will be able track these numbers. For example, when my husband Phil was diagnosed his paraprotein was 32 and now a year later the paraprotein is down to "a trace". Phil had quite a few lesions and some bone damage at diagnosis and so some of this has been fixed (two leg operations to stabilise both femurs) and the rest is being monitored with scans. We know other people diagnosed with much higher PP numbers but with no bone damage so each case is unique.
I hope this helps a bit.
Megan
Hi Mary and Charlie,
The one thing I have learnt since my husband Phil was diagnosed with MM is how unpredictable everything related to this disease is. We met one man while Phil was on treatment who, after one three week cycle of velcade-dex-dox had his paraproteins go right down to zero. I can't remember where his levels started but I am sure it was higher than 13.5 so it does happen.
Good luck to Charlie for the transplant in July.
Megan
Hello Pauline and Marc,
I am so sorry you have had to join this forum but it is a wonderful place to ask questions and get support, everyone is very helpful and friendly.
My husband Phil was diagnosed with MM a year ago at the age of 43 and it was a shock. He started feeling unwell with back and rib pain in November 2011 and it took six months to get the correct diagnosis and by that time he had extensive bone damage so he was in a lot of pain, struggling to walk and climb stairs. At this time it was still his back and ribs that hurt the most but it turned out that his femurs were where the most damage was so he had two operations, one on both legs, to put a nail in the femurs to stabalise them. Phil had five months of treatment, six cycles of dex-dox-velcade and then he had a stem cell transplant in December and now five months on is getting better and stronger everyday. Phil still has bone pain but it is much better than it was and he is able to do most things again that he could before the MM just sometimes slower or more carefully.
Which trial is Marc on? Have the doctors checked for blood clots as this can cause swelling. The top of both of Phil's legs swelled up at one point during treatment but despite scans, x-rays and tests they never worked out why and it went away when he had the priming for the stem cell harvest.
It takes time and everyone responds differently but for Phil, one year on, he is feeling much better.
Megan
Thanks for this Alex,
I have printed this off as Phil would like to try it to see if it helps. Phil's back continues to improve although some days are better than others. If he can avoid having the kyphoplasty he would like to so hopefully these exercises will help him to continue to strengthen his back.
Megan
Hi Mandy,
I am glad to hear you are feeling so positive and strong. Hopefully you have had your second lot of stem cells by now and then it is just a waiting game, watching your blood counts drop and then the happy day when they start to climb again 🙂 My husband Phil was confined to his room for about two weeks when he had his stem cell transplant in December. He was unlucky as his room had no window, just a painting on the wall, but I could honestly tell him each day that he wasn't missing anything as the weather was grey, dull and rainy!
Keep us posted and stay positive.
Megan
Hi Dan,
It is great to read such positive news for you and your Dad. I don't have any experience of a second stem cell transplant but I think Eve is right that the general outcome is approx half the remission time as was achieved from the 1st transplant, as your Dad had quite a long remission the first time this bodes well for the second transplant. I have also read quite a few comments/blogs by people who have said their second transplant was easier than the first. This was partly because they knew what to expect and partly because the anti-sickness medication is used to greater and better effect now than it was even five years ago.
My husband Phil had his stem cell transplant in December and I can tell you from our experience that he felt really rough for about five days while in hospital (he was in for 24 days in total) and then when he got home he was really, really tired for the first month but week by week he regained his strength and started feeling better. Everyone has a different experience but it is doable and if the result is another period of remission it will be worth it.
Good luck to your Dad and good luck to you for your exams.
Megan
Hi Helen,
Velcade seems to be particularly annoying for wait times. Phil had to go in for the blood tests in the morning and then they had to wait for the results of the tests before they would even make up the velcade and then you had to wait for the velcade to be delivered to the ward and then you had to wait for someone to inject it and then finally you could go home. For a grand total of about 10 minutes of treatment Phil was often there for six hours or more. There was no option to have blood tests done at our local hospital the day before so Phil just had to go and be prepared to wait. I don't think you are grumpy at all, there has to be a better way to organise it but I am not sure what that is.
Even now that Phil only needs Zometa once a month it can still be a longish wait. This month it was about four hours at the hospital. Bart's has a tea/coffee/water/juice trolley with biscuits in the main waiting room where you can help yourself so there is no shortage of drinks but the chairs in both waiting rooms are very uncomfortable. Phil and I can never understand why you would have hard, low, plastic chairs for people who predominantly have bone damage. The good thing about Bart's though is once you are called through to the treatment rooms the chairs for the patients are comfy (the relatives find whatever they can to sit on!) and once you are in the chair you can stay there all day until your treatment is done if you want to.
Phil was put in a separate room twice to wait by himself when he was recovering from pneumonia but I know there are not enough private rooms for everyone to have one. The germs in the waiting room did concern us a few times, it often seemed to be the carers/relatives/friends who were coughing and spluttering the most 🙂 but we were both very careful to use the hand gel often and to not breath too deeply while we were waiting. We couldn't really complain too much about this as we get the London Underground to and from the hospital so who knows what we come into contact with on the journey!
Phil (and I) have enjoyed talking to other patients and carers while we wait as we find out lots of useful info that way and it passes the time but sometimes we would be anti social if Phil wasn't feeling great, he would snooze and I would listen to my ipod.
I know it is a bit late to answer your earlier velcade questions but Phil alternated having the velcade in his stomach with having it in his upper arms, there is some debate online about whether this is as effective but Phil was never told he couldn't have it there and it spreads the bruises out and allows the various injections sites to recover a bit. Phil was also never told he couldn't drive and he did drive off and on throughout his treatment but I think, as with so much with Myeloma, it will depend on how you feel on the day.
Megan
Hello everyone,
I have just listened to the Food Programme episode mentioned in the article by Brian Durie that Peter posted above and it was very interesting, even more so for Phil and I as Sheila Dillon who presents the Food Programme is treated at Bart's by the same consultant as Phil is treated by.
If anyone would like to listen it is now available online at this address:
http://www.bbc.co.uk/programmes/b01shstp
Megan
Hi Christine,
I am so sorry about the BMB results. I can't help with your question but I just wanted you to know I am thinking of you and Chris and hoping Chris finds a treatment plan that will not make the neuropathy worse.
Megan
Hi Tom,
Sorry to hear that your bone pain is back. Phil had bone pain all through his PAD treatment and SCT and he still has it now although some days it seems better than others. His main problem is his back and ribs. Phil has had a consult to see if kypholplasty would help but at the moment he has decided against it, he will see the consultant again in June.
None of this really answers your question except to say that for Phil the bone pain is better or worse depending on how active he has been. We have not been told that there is any reason for concern and we have also heard that sometimes the SCT itself can help with bone pain. Hopefully any additional scans will not delay your SCT. Phil had a MRI the day he was admitted for his transplant as his back was not getting any better. Phil asked for the MRI but there was no talk of delaying the transplant for it.
Megan
Hi Clare,
Welcome to this forum, I am sorry you have had to join us but I am sure, like me, you will find everyone here very helpful and supportive.
My husband Phil was diagnosed with MM at the end of May 2012 aged 43, quite a shock for both of us! Phil has been treated at Bart's since his diagnosis, firstly on the PADIMAC trial which was dex-dox-velcade and then for his SCT. We have been very happy overall with the care he has received at Bart's, there have been some days that have tested our patience but I think that would happen anywhere with the stress and worry that can sometimes happen during treatment :-). Dai and Mavis have already provided some helpful viewpoints and although I won't claim to be a Bart's expert I will happily try and answer any questions you or your Mom might have. If it helps I documented Phil's SCT in this thread:
http://www.myeloma.org.uk/patient-services/discussion-board/treatment/phils-sct-journey/
The SCT was the right choice for Phil and although he did have a few days were he felt rotten it was doable. When he got home he was very tired for the first month but since then he has seen a marked improvement week by week. When Phil was diagnosed his pp levels were 32, pre transplant there were down to 5 so very similar to your Mom's response. Phil's transplant was December 20th, 2012 and at the last check his pp levels are less than one so we are hoping that they will reach zero so for Phil the SCT was worth it.
If you have any specific Bart's queries please ask but I will say again we have been happy with Phil's treatment there.
Megan
Hi Richard,
I hope the delay is a short one and your liver results return to the normal range quickly. It is annoying that the drugs you need to make you well can cause so many other problems, it is good that they are on the ball though to avoid further complications.
Megan
Hi Maureen,
I am glad to read that Ian is feeling better, hopefully the bed sore will be fully healed soon.
Are you making the food you take in? I know it is more expensive but maybe, to save yourself some time, you could buy ready made things from the supermarket? I found I got very tired while Phil was in hospital for his SCT, trying to fit in work, chores (I let most of the chores slide) and visiting the hospiatl was very tiring and I only had to do it for 24 days, you have been doing it for much longer. Any short cuts you can take to give yourself some time to rest will be worth it in the long run, you need to look after yourself as well.
Megan
Hi Dai,
There does seem to be varying information depending on who you talk to. My husband Phil receives Zometa once a month and was told it would be for two years. When Phil was on treatment it was added on with the other drugs once a month and was still given while he was in hospital for his SCT. Now that he is post SCT he is having it once a month when he goes in for blood tests. It seems to be flexible as it will actually be more than a month the next time he goes in but we were told it will only be for two years.
Megan
