bandityoga replied to the topic Any experience of DTPACE? in the forum Treatment 10 years, 4 months ago
Hi Sarah
Glad to hear M is making progress and DTPACE has worked. Keep me updated on SCT.
Hubby on velcade and meeting with consultant on Monday. Fingers crossed FLC going down.
Just returning from a lovely holiday in Cornwall.
Never give up hope and keep praying.
Maureen x
bandityoga replied to the topic We think it's on the way back in the forum General 10 years, 5 months ago
Vicki
Ian is on his 3rd cycle of velcade and dex. After 1st cycle FLC went from 820 to 545 but rose to 660 after 2nd cycle. Consultant thought it might be a blip but would think about changing treatment if FLC continue to rise. I asked if he would add cyclophosphamide but said no as velcade wouldn’t be working. Not very happy so phoned…[Read more]
bandityoga replied to the topic We think it's on the way back in the forum General 10 years, 5 months ago
Hi Vicki
I hope Colion’s FLC go down next meeting with consultant, it may be because of infection. We are waiting to see if Ian’s will still be rising when we meet the consultant in 2 weeks time. Hopefully it was a blip in both cases.
Off to Cornwall next week Saturday for a week, can’t holiday abroad yet.
Thinking of you both.
Maureen
bandityoga replied to the topic Sct date in the forum Treatment 10 years, 5 months ago
Hope all goes well with the SCT?
We attended an information day in Glasgow and would recommend it.
Good luck
Maureen
bandityoga replied to the topic FLC rising after 2nd cycle of velcade in the forum Treatment 10 years, 5 months ago
Hi David, Megan and Eve
Thanks for your replies. I spoke to Maggie and she informed me that as Ian had an infection it is possible that is why the FLC could have risen. I also asked the consultant if he would give Ian cyclophosphamide he said no as if his FLC rise again he will change to revlimid. Maggie advised me to go for a second opinion if…[Read more]
bandityoga started the topic FLC rising after 2nd cycle of velcade in the forum Treatment 10 years, 5 months ago
My hubby Ian has finished his 2nd cycle of velcade + dex . After his first cycle his FLC dropped to 567 from 898 but have now risen to 679 after his 2nd cycle. Consultant thinks it may be a blip and he is continuing on velcade for 3rd cycle. Has anyone else experienced this?
Maureen
bandityoga replied to the topic Just checking in in the forum General 10 years, 5 months ago
Hi Jean
Good to hear Mike is getting stronger. Enjoy your holiday.
We are hoping to get away for a week at the end of June but haven’t decided where.
Maureen x
bandityoga replied to the topic Back on the roller coaster in the forum General 10 years, 5 months ago
Hi Helen
Nice to hear you had a lovely 60th birthday and all the family were good to you. I had mine last year when Ian was in hospital. My daughter treated me to 3 days in Nice and my son gave us vouchers to use at Gleneagles. It was a real treat.
Hope you are doing well.
Maureen x
bandityoga started the topic Informatio day in the forum General 10 years, 6 months ago
My husband Ian and myself attended the myeloma information day at Glasgow on Saturday. We found it was worth going to and met up with Maggie, Hannah and Ailsa . Good to know that there are a lot more treatments being tested. Nice meeting others with myeloma and hearing their stories, it helped us a lot and I would urge anyone to go when they come…[Read more]
bandityoga replied to the topic Any experience of DTPACE? in the forum Treatment 10 years, 6 months ago
Hi Sarah
It must feel like M is going through a really rough time, but there is light at the end of the tunnel. My hubby Ian had sepsis, c diff and mrsa when he was in hospital and in isolation. We both were scared and anxious most of the time, as he also couldn’t walk. Roll on one year and 4 months, he is walking and we have had short breaks…[Read more]
bandityoga replied to the topic Date for SCT in the forum Treatment 10 years, 6 months ago
You must be pleased with results. Good luck with SCT. Hope it gives you a long remission .
Maureen x
bandityoga replied to the topic Newcomer: Should I ask to be screened for MGUS/myeloma? in the forum Newcomers 10 years, 6 months ago
Hi Sarah
My husband had back pain which was mild initially, went to gp sent away with pain killers. Took 7 months to be diagnosed, by which time he was in considerable pain. We went privately for an MRI scan and they found a huge mass on his spine. He did have bloods taken but they didn’t show anything sinister as he has light chain myeloma and…[Read more]
bandityoga replied to the topic Any experience of DTPACE? in the forum Treatment 10 years, 6 months ago
Sarah
Enjoy the bank holiday and have a nice bottle of red.
Maureen x
bandityoga replied to the topic Any experience of DTPACE? in the forum Treatment 10 years, 6 months ago
Sarah
I take one day at a time and try not to look to far ahead. Ian is walking much better and now walks a little without sticks so do not give up hope that M will progress. Hope the treatment is not too harsh on him.
Thinking of you both
Maureen x
bandityoga replied to the topic Back on the roller coaster in the forum General 10 years, 6 months ago
Sorry to hear that younhave relapsed. Hopefully you will get treatment which doesn’t have too many side effects and will give you a long remission.
Would you go for another SCT?
Maureen
bandityoga replied to the topic Date for SCT in the forum Treatment 10 years, 7 months ago
Izzie
My husband will have to make the decision to go for SCT if he reaches remission. It must be very frightening but if it was me I would always wonder what if.
Hope all goes well and you will get a long remission .
Maureen
bandityoga replied to the topic velcade working in the forum General 10 years, 7 months ago
Jean
Hope the results of the MRI are good and you get away ok. Are you going somewhere nice?
Maureen x
bandityoga replied to the topic Any experience of DTPACE? in the forum Treatment 10 years, 7 months ago
Sarah
Good luck with the new treatment, you certainly deserve it.
Maureen x
bandityoga replied to the topic velcade working in the forum General 10 years, 7 months ago
Jean
Hope you got good news today. I dread meetings with consultant too.
Maureen x
bandityoga replied to the topic velcade working in the forum General 10 years, 7 months ago
Dick
Ian had Neuropathy with CTD on previous cycles . He has noticed a slight change in his legs but nothing to be concerned about yet!
Have your FLC reduced?
Maureen