Hi Chris,

I will certainly post about the kyphoplasty once things move along. Phil has finally managed to get his consultant at Bart's to write a referral to a neurosurgeon for him so depending on how long the waiting list is Phil should hopefully hear something in the next few months. Phil has been asking about kyphoplasty since June/July…[Read more]

Hi Jean and Frank,

I just thought I would add a bit more encouragement for Frank. Phil and I met with the Prof today at clinic and he is very pleased with Phil's progress. Phil has now reached the VGPR stage which stands for very good partial response, this means there has been a 90% drop in the pp levels since diagnosis, Phil's pp level is…[Read more]

Hi Jean,

The long wait must make it more difficult, it gives you too much time to think!! I know I was the same, Phil was diagnosed in May last year and it was such a whirlwind – diagnosis and then straight into treatment and then treatment stopped to have two operations to pin both femurs and then back into treatment and then suddenly the…[Read more]

Hello Trish and Peter,

I am so sorry to hear about Peter's relapse. My husband Phil had the same treatment as Helen for his first round treatment, dex-dox-Velcade. Phil had a very good response on this treatment and had very few side effects except for the peripheral neuropathy that Helen has mentioned. Peripheral neuropathy is a known side…[Read more]

Hi Jean and Frank,

I had the same concern before Phil's transplant so I called the infoline and although I didn't completely understand Maggie explained that the stem cells are treated so there is almost no Myeloma left and with the strong chemo before the transplant when the cells are returned they start fresh and new. Phil's paraprotein was…[Read more]

Hi Daniel,

I am so sorry to hear that your Dad is in hospital and having problems with his spine and legs. I don't know the answer to your question about radiotherapy and velcade but I assume the doctors would stop the velcade for a short time while your Dad had the radiotherapy if necessary. My husband Phil had one of his cycles of velcade…[Read more]

[u]Day ????[/u] – I stopped counting when Phil got home 😀

Thank you all for your kind and helpful comments. I can confirm that Phil has been taking it easy and not rushing and trying to do too much too quickly. I have had poor Phil quarantined in the house since he arrived home but luckily he has not felt up to venturing out. This allowed…[Read more]

Hi Phil,

Sorry to hear about the winter bug:-( but delighted to hear you are celebrating your 2nd anniversary. 🙂

Megan

Hi Rob,

I can't help with the infusion pump as Phil never had anything like that but we completely understand the Borg side of things. 😀 When Phil was in for his stem cell transplant we kept telling his stem cells to "assimilate" and we pictured them as nano probes running around inside his body!

Megan

Hi Sarah,

I am so glad to hear Henry has got rid of the nasty chest infections. I know it is early days but so far Phil has managed to stay infection free but I am a bit trigger happy with the thermometer still, I suppose it will take time to stop worrying constantly!:-)

Phil originally tried a 10mg dose of amitriptyline daily for the…[Read more]

Lisa,

So sorry to hear that Mick has an infection, hopefully he will be back home with you on Tuesday. I know when my husband Phil was admitted to hospital in the summer with pneumonia I was very worried but the hospital soon got his temperature under control. I hope Mick feels better soon.

Megan

Hi Grayham,

Welcome to the forum, you will find lots of very helpful people here and although things may be slightly different in Australia you will find from reading the posts here that even within the UK treatment varies from hospital to hospital.

My husband Phil was diagnosed with MM in May 2012 at the age of 43. Phil participated in a…[Read more]

Hi Tom,

Good luck with the PAD treatment, I hope the side effects continue to be minimal. My husband Phil had no real side effects except for neuropathy in the feet, be sure to tell your consultant if the neuropathy gets any worse so they can look at adjusting the dose. Phil is recovering well from his SCT but the neuropathy is still an…[Read more]

Hi Phil and Tom,

Phil – thank you for asking the question and thank you Tom for your response. My husband Phil does not wear any jewellery but I have been worrying that carrying a card in his wallet may not be good enough, now that he is home from his SCT I need to research this a bit more and convince Phil that a bracelet is the way forward…[Read more]

Hello Rob,

My husband Phil was on the the PADIMAC trial at St. Bart's in London. He had six cycles of dex-dox-velcade that finished in October. Phil has just returned home from his Stem Cell Transplant. If you have any questions about PADIMAC please let us know. I think it depends on the hospital but Phil did not actually have a line put in…[Read more]

Hello Deb,

We are back at Bart's today for blood tests for Phil, the first since he was released on Wednesday after his SCT. Phil drove us here today as there is no congestion charge on a Saturday and I wouldn't let him go on the tube until we know his blood counts have all recovered. 🙂

Bart's has a hostel that family can stay in right…[Read more]

Hi Paul,

Yes, Phil was in room 3 on ward A – no window but on the quiet side of the ward. 🙂 There is the Internet available on the TVs in the room but Phil never used that. Phil had an iPad that he was able to tether to his smartphone to use the Wifi through the phone. Sometimes the connection wasn't great if too many people were using the…[Read more]

Hello Paul,

My husband Phil was diagnosed in May 2012 at the age of 43 and went through 6 cycles of PAD and as Helen mentioned above I have just documented his stem cell transplant in the Treatment part of this forum (look for Phil's SCT Journey). Phil found the transplant less difficult than he/we had been anticipating. It was not easy and…[Read more]

Hello Deborah,

It is all a bit mind blowing at the start, isn't it? So much information to take in. My husband Phil was diagnosed with MM in May at the age of 43 and he was treated on the PADIMAC trial at St Bart's in London. He had six cycles of dex-dox-velcade and last night he returned home after 24 days in hospital for his stem cell…[Read more]

Day Twenty Four (Day Twenty) Home

A very frustrating day but Phil is finally home. There was a mix up yesterday and the doctor crossed the anti sick meds off Phil's list of drugs instead of the pill he was taking for his neuropathy. When Phil asked for the anti sick meds he was told he couldn't have them and this took 24 hours to sort out.…[Read more]