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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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,…[Read more]

Hi Babs,

Wonderful news about your results and your holiday plans.:-) It is very inspiring to read about everyone's international travel. Phil is now 2 months post his stem cell transplant and he has been home from the hospital since January 9th. We aren't quite up to International travel yet but today we booked a week away at the end of…[Read more]

Hi Dai,

That is wonderful news, I hope the neutrophils behave themselves, Phil has had two short courses of GCSF injections since he has been home from his transplant and both times they sent his neutrophil levels way up (I think they went to 18 once!) and although the neutrophils dropped again once the injections were done they did not drop as…[Read more]

Hi Tom,

Phil and I were both delighted to read your news, well done!! 🙂

Megan

Hi Vicki and Colin,

I just wanted to wish you good luck for Wenesday. I can't help with the maintenance question as Phil does not have the option, it is not part of the PADIMAC trial. Phil is like Colin, fed up with all the drugs, so he is now looking forward to them slowly decreasing until, like Tom, he becomes drug free!! :-). Part of me…[Read more]

Hi Gina,

My husband Phil had Melphalan as part of his stem cell transplant but the info guide on this site about Chemotherapy does mention Melphalan as a treatment option taken as tablets.

http://www.myeloma.org.uk/files/8012/8031/0094/Chemotherapy%20Infoguide%20Dec%202009.pdf

I hope this helps. Good luck to you and your Mom.

Megan