Hi Sara,
I can’t really help with most of your questions as my husband Phil was diagnosed with Myeloma not MGUS or SM. Phil has bone pain from the damage caused by Myeloma and this has not gone away completely after treatment so he has ongoing pain but one of the things the doctors are tracking to help decide when treatment is needed again is the calcium levels. If the calcium levels rise in his blood it may be an indication that the bones are breaking down again if the Myeloma is active. I do not know if calcium levels differ for those with MGUS and SM as if the Myeloma is not yet active I would think it would be at normal levels?
I hope the doctor is able to answer your questions but you could also call the Myeloma Infoline (the number is at the top of this page) and Ellen should be able to answer some of your questions re: MGUS and SM.
Megan
Hi Keith,
It is my husband Phil who has Myeloma and he also has trouble getting a full nights sleep due to the neuropathy he has in his feet from the Velcade he had as his initial treatment. He finds wearing socks to bed helps a bit. Also massaging the feet and legs with cocoa butter can help.
It may also be that your body is still recovering from the transplant and it may take a bit of time for you to adjust and get back into a routine. I know Phil never got a full night of sleep while he was in for his transplant with the various people coming and going checking vitals, giving drugs, etc, etc.
I hope the pins and needles go away for you soon, they can make sleeping difficult.
Megan
Hi Stuart,
This is my test post from my blackberry.
Thanks,
Megan
Hello MM,
I agree with Rebecca, my understanding is VGPR is measured from diagnosis. My husband Phil took part in the PADIMAC trial which was looking at delaying the SCT if a VGPR (90% reduction) was achieved after treatment of velcade-dox-dex. In Phil’s case his pp was 32 at diagnosis and was down to 5 after the stem cell harvest, as this was not a 90% reduction (VGPR) he then had his SCT. For Phil VGPR was achieved after the SCT but it was still his pp from diagnosis that was used to measure from.
I hope that helps.
Megan
Hello,
David – thank you for asking this question and thank you to Rebecca and Helen for your helpful replies.
Phil is slowly relapsing for the first time and at his clinic appointment today light chains were mentioned for the first time ever. Since his diagnosis we have only ever been told about the PP numbers. I knew I had read this thread on the forum so I searched for it and I have printed it out for Phil so he will know what to ask when he calls on Friday to get his most recent blood test results. So far we only have the Lamba number so we will need to get the kappa result as well to fully understand what is happeneing.
Thanks again to all three of you.
Megan
Hi Carol,
Congratulations of your great results at day 42 🙂
As with everything MM related it seems to depend on the individual hospitals and doctors. My husband Phil has Zometa and he never stopped having it. The day he was admitted for his SCT he had his monthly Zometa and this has carried on monthly with no break since his SCT which was in December 2012. We had heard that it is only given for two years by some hospitals but others seem to stay on it longer, it will be two years in May since Phil’s diagnosis and when he started on Zometa so we will see what happens then.
Parmidronate may be different though?
I hope you are enjoying the lovely weather we are finally having in London, it should make your walks a bit more pleasant.
Megan
Thanks Vicki,
We had a shock in December when we found out Phil’s PP had been rising since August but we are getting used(?) to it now. We were told in July 2013 it was at zero and we had just assumed it was still there but it turns out Phil only maintained the zero for one month! At the moment he is still on a watch and wait plan, he has a blood test once a month when he goes in for his Zometa so we are hoping that the PP will stabilise and stop the upward trend but we are glad that we are prepared this time and that treatment can start again before any more bone damage happens. One day at a time 🙂
I was glad to read you and Colin had booked a holiday, we haven’t ventured out of the UK since Phil’s diagnosis but I do love reading about other people’s travel!
Megan
Hi Laura,
Welcome to the forum, I am glad to read that you are recovering well from your SCT. My husband Phil was diagnosed with MM at the age of 43 in May 2012. His first line of treatment was on the PADIMAC trial which was to see if the use of Velcade could delay the need for a SCT. In Phil’s case his response to Velcade was not good enough to delay the transplant so he had his auto SCT in December 2013.
You have some interesting choices to make, Phil was not offered maintenance and he is happy to be off treatment at the moment but if it delayed a relapse with minimal side effects it would be a good thing, if only we all had a crystal ball 🙂
If you want to join the Under 50s forum you just need to email Scotty or Phil and they will send you a link. scotty@brandmojo.co.uk or phil.kelly2@btinternet.com
Megan
Hello Kay,
Welcome to the site but sorry you have had to join us. The positive thing is you are being monitored and your doctors will being keeping an eye on your blood results and any new symptoms, make sure you tell them about the pain in your sternum.
How to avoid ulcers from the worry is something I am still trying to work out myself :-). It is my husband Phil who has myeloma, he was diagnosed in May 2012, had six cycles of treatment and then a SCT in December 2012. He has not been on any treatment since then except for the Zometa but his numbers are slowly rising so the next treatment will probably start this year sometime. Through all of this there have been many ups and downs and aches and pains. Phil always reports any new or increasing bone pain to his doctor or the nurses, so far the pain has not resulted in any more bone damage and has often gone away for weeks at a time but you are right, every time the pain comes back we both think, what if?
I had six counselling sessions which helped me enormously and we both try and live day by day without worrying about what tomorrow may bring, it is not always easy to keep your mind from thinking scary thoughts but I have found with practise I am getting better at focusing on the here and now. There is no easy way to stop worrying but some people find yoga or meditation helpful, I keep thinking I should try these but I haven’t quite gotten round to it yet!
For me, as a supporter, counselling was the thing that helped me get to grips with the worry, I was able to talk through everything and work on coping strategies which I now use all the time. I still worry but I panic less if that makes sense?
I also find this forum very helpful as I feel less alone when I read the posts.
Megan
Hi Nicki,
Welcome to you and Kevin. My husband Phil was on the PADIMAC trial at Bart’s. His paraprotein did not reduce enough to delay the SCT so he had his transplant after he completed the six cycles of the dex-dox-Velcade. The trial was looking at delaying the SCT if the initial treatment decreased the pp or light chains by 90%. I know of a couple of people who were on the trial though who were able to delay their SCT as the Velcade worked well for them.
I do think you are right that the novel treatments that are becoming available may reduce the need for transplants as myeloma will hopefully start to be managed as a chronic condition.
Megan
That is wonderful news David 🙂
Megan
Hi Sarah,
One last suggestion after reading your response. I know it is not available everywhere but have you checked if M could have patient transport? When Phil had both femurs operated on he could not travel on public transport and driving to the hospital was not an option. Phil was able to get patient transport to and from his appointments. It is not an ideal solution as, at least in London, it often made it a longer day as you get picked up early and dropped off later than needed and you need to wait for other people to be picked up as well. They also did not allow me to travel with Phil, it is for patients only. You may want to look into it as a possible help a few days a month? You need to book it in advance so this may not work for you and M but it is good to check on all your options.
Megan
Hi Sarah,
It is a difficult balancing act but you are right not to rush into any decisions. Do you have people who live near by who can help? The reason I ask is that M may need a lot of help at the moment but as the treatment gets the Myeloma under control he may be able to do more without your help. If there are family or friends who can help you when you need some extra resources this may let you balance work and helping your husband more easily.
I was 38 and my husband Phil was 43 when he was diagnosed with MM. My employers have been very understanding and I have been able to have time off when I need it or long lunches when I need to be with Phil at one of his appointments. I am lucky that the hospital Phil is treated at is a ten minute walk from where I work, I am not sure I would have been able to cope if this was not the case. We are moving to a new office building next year that will be a 30 minute trip from the hospital so I may need to rethink things then. I have never attended every appointment with Phil but I have tried to be there as often as possible.
I still find it hard to concentrate at work some days if I am worried about Phil but I have also found it helpful to have something non MM related to concentrate on. We are too young for me to retire but I only work two weeks per month and I find this part time approach works well for Phil and I. I got way too tired when Phil was going through treatment and the SCT, I did not find a good balance then as there was too much to do between home, work and the hospital but I managed it and I am glad I kept my job as Phil is now only going to the hospital once a month for his Zometa and is doing well.
I have always kept my managers in the loop about Phil’s treatment so they know what is happening and what might happen. So far for me it has worked out okay but there are no easy choices, you need to do what is best for both of you and sometimes it is hard to know what that is.
Megan
Hi Andy,
Well done Steph for catching it quick. Hopefully your pomalidomide will not be delayed for too long, will they wait until your neutrophils recover a bit more before starting it again?
Phil is battling a bug at the moment as well, he has been given penicillin and his temperature has been behaving itself so no need for a hospital stay but it is frustrating, especially as we never seem to find out what the infection actually is. Did the various doctors come to a conclusion about what you had?
I hope you are continuing to enjoy non NHS food 🙂
Megan
Hi Mary,
Sorry to hear Charlie collapsed, I hope the chest infection is on the way out by now.
We live in London so I can’t offer any help on your choice of hospital but I hope the move into the new house goes smoothly.
Megan
