Thanks Jo,
We may look into the electric pulse thing if it doesn't get any better. Phil is hoping he will be able to block it out more when he is feeling better and gets busy doing things again. Phil finds it most noticeable when he is sitting or lying and doing nothing so hopefully once he is moving more it will fade from his mind a bit.
Megan
Hi Peggy,
I hope you start to feel better soon and that the rest of your stay in hospital goes smoothly.
Megan
Hi Andy,
Phil and I are relatively new members and we have found the forum very useful, it is so nice to know you are not alone and most things we have experienced some one else has been through before. It is also nice to read the good news because as newbies it can all seem a bit overwhelming at the start of the journey.
I hope the RCD continues to keep the PP numbers down.
Megan
Ann and Pete,
Good luck for tomorrow, hopefully the cells will behave themselves and you will get enough. I'm glad it went well today.
Megan
Hi Christine,
I will hopefully be starting a new post tonight about Phil's auto stem cell transplant but I don't want to jinx things by posting it too early! We are going to St. Bart's this afternoon and provided they can find a bed for Phil he will be in for his transplant. If no bed is available we will come home and try again tomorrow. Phil is booked in for a MRI today so if no bed is found it won't be a completely wasted journey. Hopefully the MRI will help establish if some of his new pain is due to bone damage or if it is just a side effect of the medicines. We know what you mean about too many tablets. It is also annoying that the drugs that make you better make you worse in other ways!
Megan
Hi Christine and Chris,
I am afraid we have not found a magic wand yet but just wanted to offer Chris my sympathy as I know how annoying it can be. My husband Phil had six cycles of Velcade sub-cutaneously and during the second cycle his fingers tingled a bit but that went away. At the start of the sixth cycle Phil's feet became very numb and felt cold all the time so they reduced the last two doses of Velcade. Unfortunately his feet have got worse instead of better, there is now a constant burning sensation that is not helped by massage or any type of lotion. Phil has just been prescribed a low dose of Amitriptyline but he has only been taking it for six days and the doctor said it could be a couple of weeks for it to help (if it does help!). We have read elsewhere that it can take up to four months for the neuropathy to fix itself so we are hoping that even if it does not go completely the burning sensation will stop.
Sorry I can not help but I just wanted to let you and Chris know that we understand how awful it is and hopefully both Phil and Chris will recover from it soon.
Good luck with the Allo in January.
Megan
Hi Jean,
Phil was not told to avoid people but we have found the advice and details a bit non existent since he finished his induction treatment! Most of what we knew about the harvest phase came from this forum 🙂
While Phil was doing the daily injections he actually did not end up going out much as they had to done at 4pm everday but because of the injections his neutrophil levels were 18 (!!!) on the day of the harvest so he was like superman 😀
I think as long as Frank takes the normal precautions of avoiding any known sick people and frequent hand washing it should be fine to see people as it is only one shot of chemo. Phil gets the tube to and from all his hospital appointments and that is as many people as you can get!
Megan
Hi Tom,
Phil has managed to keep his hair so far, it did thin out a bit during the first four cycles but since then it has stopped falling out and it was never noticeable that it was being lost unless you looked at his pillow!!
Work wise I can't really help. Phil volunteered for redundancy in January, we had sold the house and were moving to Devon. Phil finished work at the start of May and two weeks later he was diagnosed with MM. Luckily we were able to pull out of the sale of our house or we would have been homeless on top of everything else!!
During the summer I don't think Phil would have been able to work at all due to the surgery on his legs but once he was off the crutches he may have been able to work a couple of days a week when he was feeling up to it but most days he was quite tired. I think it is different for everybody and Phil has quite extensive bone damage so I think this has added to the tired feeling, it probably also depends on the job. Phil's job involved 12 hour shifts and I don't think he would have been up to that.
Hopefully your work will allow you to carry on as long as you feel able and then maybe change your hours or work from home if possible on days when you don't feel so well? I think after the SCT you need to take it easy and make sure your immune system has recovered before you go back but some people on this forum have returned fairly quickly. The main thing is to listen to your body and don't overdo it and beware of infections.
I hope this helps.
Megan
Hi Jean and Frank,
Phil and I found things a bit confusing as well, we sometimes get the feeling that all the doctors and nurses assume the other doctors and nurses have told us things so it ends up that nobody tells us anything!!! Phil was just given his injections to take home and we worked out from the instruction booklet enclosed with them how he should inject himself!! Phil managed it though and yesterday they harvested 7.75 million cells so Phil is all set for the transplant on the 17th.
I have already re-read all the posts on this site in preparation:-) A few points for the harvest that helped Phil may also help Frank. Phil ate a banana a day in the lead up to the harvest and this allowed him to avoid the nasty potassium pills they give you if your potassium levels drop. A glass of milk the morning of the harvest also helped with his calcium levels.
the actual harvest was fairly easy just very boring for Phil as you can't really do anything as you can't move your arms for about five hours. Phil also didn't really have any side effects from the chemo blast, he just felt tired, but to be fair he has been feeling fairly tired all the way through the treatment so far.
Any questions, please ask.
Megan
Hi Tom,
Welcome to the forum. My husband Phil was diagnosed in May this year with MM at the age of 43. He has just completed six cycles of PAD at St. Bart's in London. His stem cells were harvested yesterday and the transplant will go ahead December 17th. With PAD he had very few side effects other than being very tired but not being able to sleep (the Dex effect) and during the sixth cycle he developed peripheral neuropathy in his feet. Phil is also receiving zometa monthly. The PAD treatment has dropped his PP levels from 32 to 5 at the last count at the start of November.
Any questions you have about PAD please ask and Phil and I will help if we can. It is good news that they are treating your MM early, hopefully you will be able to avoid any major bone damage by treating so soon. Phil has had both of his femurs pinned since the diagnosis and he may need khyoplasty for his back next year but we are hoping that the rest of his bones stay in one piece 🙂
Good luck with the treatment and keep us posted.
Megan
Thanks Ali,
It is really sweet that you remembered the date. Phil and I are looking forward to ticking another stage off on the road towards remission, hopefully tomorrow will be enough to get stem cells for two transplants but they have Phil provisionally booked in for Thursday as well if needed.
The picture of your Mum and Dad is great!
Megan
Hi Carol,
I am so glad to hear it is going well. Starting a new treatment (or treatment for the first time in my husband's case) is always worrying but we have the view that we just need to crack on, so far we have coped and I am glad you are too 🙂
If you have any questions about PAD going forward just let me know and Phil and I will help if we can.
Megan
Hi Karen,
Welcome to the forum. Everyone here is very helpful and provide a lot of support. My husband Phil was diagnosed in May with MM and he has completed his initial treatment (he is also on the PADIMAC trial that Alex is doing) and will be going in for his SCT on December 17th. Myeloma is very confusing as there are so many different types of treatment and everyone has a very different journey. PP (paraprotein) is one type of Myeloma but from what you have said in an earlier post you have Light Chain Myeloma. This means they will not be measuring your PP levels, your Myeloma is measured using the light chains. Phil has the paraprotein Myeloma as do many people on this forum but I do know Alex has light chain Myeloma. I hope this helps with your confusion, it is all so much to take in and this is made harder when you are suffering from the side effects you have mentioned. Phil and I write down all the side effects and pain he has so when we go to the clinic or the hospital we can remember all of them to tell the nurses and doctors so the medication can be adjusted if needed or something new prescribed. A lot of the medicine Phil had to take was to stop or minimise side effects from the other medication so be sure to tell the doctors about all of your symptoms as there may be a way to change or add medication to help.
I hope this helps, I have found the nurses on the Myeloma Infoline very helpful when I have been confused by things, it is a steep learning curve but they have always been able to answer my questions.
Megan
Hi Peggy,
I hope you get the date for your SCT soon. My husband Phil was in for his lung function and heart tests this week and he is going in on Monday for the priming chemo (cyclo…. – I have a terrible time remembering all the drug names) and the cell harvest will be December 5th and 6th. Phil is then going into St Bart's in London on December 17th for the SCT so we will have Christmas in hospital as well. Phil was diagnosed in May this year so his journey to the SCT has been shorter than yours but we just want to crack on and get it done, one step closer to remission we hope.
I hope your tests go well. We will be thinking of you.
Megan
Hi Chris and Lena,
Yes, Phil and I did see the little dog on the news, science is amazing and getting better at fixing things all the time. I never really had much time for science before this year but I am amazed at everything I have learned since Phil's diagnosis and astounded at what the human body is capable of. It gives me hope.
I am trying not to worry too much, one step at a time. Phil starts his tests today to make sure he is fit and healthy for the transplant – that amuses me as our definition of fit and healthy has changed quite a bit this year 😀 Phil is then due for his chemo to start the mobilisation on Nov 26th and then the stem cell harvesting on December 5th and in for the transplant on December 17th. When you break it down into individual stages it is not so overwhelming so we will start with all the tests this week and then go from there.
I hope your NP's quickly jump above 0.5 and then continue upwards. Are you enjoying Downton? It was as good as ever, roll on the Christmas special!
Megan
