Hi Mavis.

I think you may have misread our posts. I am finding Pomalidomide very tolerable and to date it has been my easiest drug regime. I think Helen has a few more issues than I but is comfortable as anyone can be on treatment with Pomalidomide.

We we’re talking about treatment after Pomalidomide which at present will be harsher drugs with a…[Read more]

Hi Helen.

It’s my Dex night/morning too my nap is over and I’m awake again.

I know what mean about hoping that Pomalidomide lasts a long time because I too know the the next drugs will be harder to tolerate. Bendamustine which is predicted to be my next treatment has a very mixed press side effects wise so quality of life will take a hit. The…[Read more]

Hi Helen.

It’s my Dex night/morning too my nap is over and I’m awake again.

I know what mean about hoping that Pomalidomide lasts a long time because I too know the the next drugs will be harder to tolerate. Bendamustine which is predicted to be my next treatment has a very mixed press side effects wise so quality of life will take a hit. The…[Read more]

Thanks everyone.

Well cycle 21 is underway and I’m all Dexed up. Tablet 1 of my 21 Pomalidomide tablets has been washed down not with beer I hasten to add but water. I’ll raise a beer and wish good luck to cycle 21 on Friday. We’ve got a busy day Friday Steph and I we’re lunching with Ian and Maureen Sinclair, from this forum, and then Friday…[Read more]

Hi Liz.

It’s my Dex night so I sometimes come around here to check how everyone is getting on. I used to be around more often but I found the forum website a bit difficult and slow after it got “updated” though it’s behaving itself tonight.

How is Kev getting on? Did he have the second round of DTpace?

You mentioned Kev’s neutrophils being 0.6…[Read more]

Hi Mike, sorry to hear that Thalidomide stopped working and hope VCD working for you.  The steroids do cause so many problems.  Hoping next blood results are positive for you.
You have been an inspiration and your helpful, informative posts gave me, and I suspect many others, invaluable support at a time when I felt overwhelmed by the enormity o…[Read more]

Hi lej13, sorry to read that your dad is having problems with his treatment. I am on velcade, dexamethasone and thalidomide, I wonder if the pins and needles could be neuropathy, in which case you do need to talk to the consultant and have the dosage changed or the drugs changed for something which dad finds more acceptable. First thing Monday I…[Read more]

Hi, yes seems a permanent problem. Not really a hoarse voice more strained, still odd.
Had an appointment with consultant today, she feels that the voice problem is the Dex! discussed feeling wiped out, not the drugs, seems that I have an infection, so have 5 days of antibiotics.
Regards
Tony F

I’m on velcade, dex and thalidomide, two weeks on, one week off, and I have the same voice probs. This is my week off drugs and I am absolutely wiped out.
Reckon dex has a lot to answer for!
Regards
Tony F

I think that you should be receiving a copy of the consultants letter as a matter of course. Mine normally take about 12/14 days after appointment to arrive, always have done.
Don’t be paranoid, you’ve got enough to worry about!
Hope you can sort it out.
Regards
Tony F

Hi Vicki &Colin.

Congratulations to you both. I hope you both had a fantastic day.

Wishing you plenty more days together that are filled love and joy.

Every day is a gift.

Lots of love to you both Andy xx

Hi Helen

Belgium was brilliant. The weather was great, the beer was great, and the natives were friendly.  I’ve been going regularly since 2002 initially it was with my running club mates. We’d do a race the first day we were there and then spend the rest of the time rehydrating lol. Must of been around a dozen times now. No more trips planned…[Read more]

Hey, congratulations you two. What took you so long Colin?
Best of luck.

Hi Liz.

I was tried with DTpace in 2012. After five days in hospital hooked up to all the infusions and the constant beeping I was later given a BMB which showed that most of my bone marrow had been wiped out though not the myeloma so I didn’t get a second cycle. It seems DTpace is like marmite it either works well or doesn’t work at all. There…[Read more]

Hi Vicki.

When nothing was working for me I was tried with DT-pace. It meant a five day stay in hospital whilst I was infused with a concoction of drugs. I think I had five drips going into me 24/7 after the first cycle, usually you have two or three, my bone marrow was nearly wiped out but the myeloma was still hanging around! So that was the…[Read more]

Hi Vicki.

When nothing was working for me I was tried with DT-pace. It meant a five day stay in hospital whilst I was infused with a concoction of drugs. I think I had five drips going into me 24/7 after the first cycle, usually you have two or three, my bone marrow was nearly wiped out but the myelobeen ma was still hanging around! So that was…[Read more]

Hiya Vinni, looks like you had a great birthday bash, your mates look as though they enjoyed themselves as well. Hope the weekend took your mind off things!
Well done on raising £400 that’s really good, you’ve got some very generous family and mates.
See you soon
Tony F

Hi Brian, following my SCT I was on antibiotics for three months. Then I was stopped. I opted not to go on maintenance drugs and was completely free of drugs for about 26/27 months.
just to cheer you up a bit has your consultant told you that after SCT you will have to have your baby injections again! I never thought about that but the chemo prior…[Read more]