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 August to do some fishing near Taunton and we are really looking forward to it.
Enjoy your travels and I hope the cold goes away soon.
Megan
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 low as they were so the boost does seem to help.
Good luck for tomorrow.
Megan
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 does worry a bit that maybe some sort of maintenance would be better but it is Phil's choice and he is happy to have no maintenance.
Let us know how you get on.
Megan
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
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 last year but it was low on the list of priorities for the doctors and the consultant but it has been high on our list of priorities!! Although the pain is not dreadful it is constant and if Phil stands or walks for more than ten minutes the pain gets worse. We have heard great things about the operation so although I am trying not to get my hopes up too much I am hoping it will help with Phil's back pain, i.e. get rid of it 🙂
Megan
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 now at 3. I asked how long after the transplant the pp levels continue to drop and the Prof said it can be up to 18 months so if Frank is starting at 2 then he will have lots of time to get to the magic 0 🙂
I hope you get some news about a bed soon.
Megan
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 treatment was done and we felt like we were in limbo while waiting for the stem cell harvest. It had all been so full on and then suddenly nothing for six weeks. This was when I called the Infoline quite a few times with questions as I think it was the first chance I had to actual sit down and think instead of rushing around.
Phil is doing well thanks, it is just over a month since he came home after his transplant and although he is still very tired,he is on the mend and getting stronger everyday. He still needs a kyphoplasty operation to fix his collapsed verterbrae and hopefully that will help improve his back pain once it is done, we don't think he is even on the waiting list for it though so it may not be for a while yet!
I hope Frank gets some news soon about a bed. Is there anyone you can call at the hospital to try and get a time scale?
Megan
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 effect of Velcade but it does not affect everyone who has Velcade. It can affect the hands and/or feet and for some people it can also creep into their arms and legs. It causes a feeling of pins and needles or a burning sensation or a numbness/cold feeling. Phil has peripheral neuropathy in his feet that causes a constant burning sensation. If Peter experiences any of these symptoms make sure you let the doctors and nurses know right away as they can reduce the dosage of the Velcade to try and prevent the symptoms getting worse. There is also medication that can be taken to help with the symptoms if neuropathy does occur. If you use the search function on this forum and type in Velcade you will find some threads discussing the side effects.
Good luck with the new treatment.
Megan
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 5 at the time of the harvest at the start of December and they have now dropped to 4. I have asked and they can continue to drop up to a year after the transplant. Everyone is different but the transplant helps get a deeper and longer remission.
It is very unfortunate that Frank still has not got a bed, I hope it can be resolved soon so you can both move forward with Frank's treatment.
Please call the infoline on Monday and I am sure Maggie or Ellen can explain it better than I have! 🙂
Megan
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 and chemo cut short last June when he needed operations on both his legs. Once the legs were healed the doctors started up the chemo and velcade treatment again.
I hope your Dad is feeling better soon and that the radiotherapy helps his spine.
Megan
[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 him to avoid the snow and he has also remained infection free.
When Phil first arrived home he needed to return to St. Bart's every three/four days for blood tests (this made a mockery of my quarantine protocols!) and needed some platelet top ups and two units of blood but last week the counts were good enough that the trip in to hospital was extended to a week and after our visit yesterday it has been extended to 10 days and Phil can go to our local hospital (three minutes drive from home) for the tests and will only need to go to Bart's if any platelets/blood are needed. Phil's PICC line was also removed yesterday.
Before the Transplant we were both obsessed with the Paraprotein results but we only noticed in passing last week that they had tested it again and it had dropped another bit from 5 to 4 so it seems all the treatment is working.:-)
The remaining side effects from the transplant are acid if Phil eats anything even slightly spicy (luckily Phil never lost his sense of taste but bland food is still required for the time being) and fatigue. The fatigue is getting better day-by-day but Phil still finds it difficult to sleep through the night and needs to rest throughout the day. Phil luckily never had any mouth ulcers and we have both now become accustomed to his new hair style, no hair is easy to manage!:-)
Thanks again to all of you for your continued support.
Megan
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 neuropathy but this did not help at all, Phil was on this for about a month but there was no change in how his feet felt. Last Tuesday Phil was given a new drug to try, 75mg 2 times a day of pregabalin – Phil thinks there may be a slight improvement. The 75 mg dose is the lowest and the doctor said that he would up the dose week by week to 100 and then 150, etc, etc until there is a response. The doctor said pregabalin was better than gabapentin as there are less side effects. Phil has not tried gabapentin but he has not noticed too many side effects from the pregabalin although it has maybe made Phil feel more tired but it is hard to sort the side effects of the drug from the side effects of the transplant!
Megan
