Hi Maureen,
That is great news that Ian is allowed out of bed, even if it is only for an hour, it is a step in the right direction. The civil wedding in July will also help as a goal to work towards.
It does seem that there is a lack of good care sometimes in the NHS, Phil has mostly been very lucky but there have been a few instances where we have not been happy, especially during an A&E visit and admission to a local hospital instead of the normal hospital he has his treatment at. We need to put so much faith in the system and it can be quite scary at times.
I know it is hard but please try and look after yourself as well. I know from when Phil was in for his stem cell transplant in December/January how tiring it is running from work to the hospital and then back to work and then home to do the laundry so Phil could have clean clothes everyday and then back to the hospital. You need to stay healthy for your sake and for Ian's so please ask for help from friends and family if you can.
Stay strong.
Megan
Hi Vicki,
Phil is doing very well thank you. His initial treatment was on the PADIMAC trial which was six cycles of dex, Doxorubicin (chemo) and Velcade. The six cycles brought his paraprotein down from 32 at diagnosis to 5 by the end of cycle six. Phil had his auto stem cell transplant in December/January and his paraprotein is now down to 3. The next test of the paraprotein will be at the end of March at his 100 day assessment so we are keeping or fingers crossed for an even lower result then.
Phil actually found that he ate more while on treatment, possibly due to the dex 😀
Sorry to hear your Dad already has neuropathy, it is so frustrating that the drugs that help you also hinder you!
Megan
Hi Vicki, Trish and Peter,
When my husband Phil had Velcade last year the cycle was 21 days with two weeks on and one week off. The Velcade was given subcutaneously on days 1, 4, 8 and 11. If Peter is due to have 8 cycles this would add up to the six months. I hope this helps.
I'm glad you had a nice curry and wine but you may find that Peter's appetite stays okay. Phil did not have any problems with sickness or loss of appetite on Velcade but please do watch out for the peripheral neuropathy. Phil now has this in his feet and it is very annoying. If Peter notices any feelings of numbness or pins and needles in his feet or hands please let the consultant know as they can adjust the dosage. Not everyone gets this side effect so you may have no problems at all 🙂
Good luck and keep us posted.
Megan
Hi Maureen,
You and Ian have both had a very tough time, I do hope the work they will do on his upper body and legs will help for when he is allowed out of bed. It is another set back but you both need to try and stay strong (easier said than done, I know) and work towards getting Ian home.
My thoughts are with you both.
Megan
Tom,
A 6am start doesn't sound very much like light duties to me!! 😀 It is very frustrating having to worry about money on top of dealing with Myeloma, isn't it?
Megan
Hi Tom,
Phil and I had similar problems when he was initially diagnosed and we tried to apply for benefits. Phil had taken voluntary redundancy from work and we were set to move to Devon. Two weeks after Phil finished work he got the diagnosis of MM so we cancelled our move and stayed in London. We found that Phil did not qualify for most benefits including a blue badge as he was too mobile. We also did not qualify for some benefits because I work too many hours so I could not get any carer's allowance. For other benefits like the Attendance Allowance we are too young to qualify. Phil ending up getting the Employment and Support Allowance but even that was a struggle, we were initially told he would not qualify due to his work pension, it took a phone call from me pointing out that Phil was not due to be able to collect his pension for another twenty years for the government to agree not to count that as income!!!
The benefits system is very confusing and nothing is made easy for you. The Disability Living Allowance seems to have very strict criteria and the need for a medical assessment to qualify. I am not sure how the government decide when an illness is classified as terminal?? I would assume that as you are still working Tom you would find it hard to qualify on the mobility/needing help with care side of it?
It doesn't hurt to try and get everything you are entitled to but it seems that what you are entitled to is often not very much! :-/
Megan
Hi Dai,
That is wonderful news :-).I hope cycle 3 goes well and that when you finally get your free lite results that they have gone down.
Megan
Hi Trish,
The waiting for results is hard. I am glad you were both able to speak to a MacMillan nurse and hopefully next week you and Peter can have your other questions answered and find out more about the next step.
Megan
Hello Maureen,
I was sorry to read that Ian had a temperature but I am glad that they found out what the infection was and he was able to return to rehab. I hope that with the rehab Ian will soon be able to go home.
Megan
Hi Tom,
Great blog, thank you for posting the link, I look forward to following your progress on treatment and your watercolour data rendering tests.
Phil and I always knew how lucky we all are to have the NHS and we knew the drugs were expensive but it is interesting to actually see the cost. As Phil was on PAD as well we can see that his six cycles did not come cheap!
Good luck with cycle two.
Megan
Hi Keith,
I hope the platelet transfusion today helped to kick start the platelet production, it must be so frustrating for you. After Phil's stem cell transplant his platelets took quite a while to recover and he needed quite a few transfusions, we do not know what his levels currently are as no one has got back to us with his most recent results, Phil went to the local hospital yesterday morning for his blood tests and no one seems to be contactable for us to find out the results, fingers crossed they are okay.
We read that having iron rich food like broccoli can help with the production of platelets.
I hope you get some good news soon, stay strong.
Megan
Dear Vicki and Colin,
What wonderful news 😀 😀 😀
Megan and Phil
Hello Marina,
I am so sorry you and your husband had such a bad time in A&E and the MAU. My husband Phil was diagnosed with MM in May 2012. Phil started treatment at the end of May and he had six cycles of dex-dox-Velcade. His second or third cycle was delayed as the medical team were very concerned about the damage the MM had done to both of his legs. He was admitted for surgery and he had two operations, one on each leg, to nail his femurs to prevent them from shattering. We were told that his chemo would start again once his legs had healed and the risk of infection had passed and this was what happened. Phil also missed one dose of the Velcade on another cycle when he was admitted to hospital with pneumonia. Phil had a similar problem as your husband, despite being potentially neutropenic he was put in a shared ward until some one higher up the hierarchy arrived and hit the roof and had him moved to a private room. At that time I didn't know what neutropenic was but as Eve has said it is a learning curve and we get better at knowing what we need to demand and say at the hospital.
The operation that your husband needs may delay the treatment and the transplant but the hip needs to be fixed as a priority. Phil had his stem cell transplant in December/January and he is now at home recovering well. Your consultant will be able to answer all your questions but from our experience things never run smoothly but Phil got there in the end with some delays along the way.
Good luck, I hope your husband is on the mend soon and that the surgeon will be able to give you more details of the operation tomorrow.
Megan
Hi Dai,
Phil has often thought about leaving due to the excessive waiting time, especially as they seem to have chosen the most uncomfortable chairs possible for the reception area – bearing in mind most of the patients waiting there have bone damage you would think the chairs would be selected with more care! 🙂 We often find that waiting for a doctor is the worst as there is normally only one or at the most two on the Day Unit at any one time and there are too many patients waiting to see them. Hopefully you were able to get in touch with someone this afternoon and they werwe able to give you good news about your blood results.
Megan
Dear Jean and Frank,
HURRAH 🙂 🙂 🙂
I am so glad you finally have the go ahead. If you have any questions please do ask. I know you followed Phil's SCT Journey while I posted but I know every hospital is different so everything I wrote may not apply. The key thing I can think of right now is to have Frank chew ice chips before, during and after the Melphalan as Phil did this and he has had no problems with his mouth at all.
Keep us posted and I am so pleased your wait is finally over.
Megan
