Megan you are right. It is the ratio you need to monitor as well as the total kappa and lambda numbers.

Carol

Andrew

As I understand it after SCT, complete response looks for no cells in the biopsy and no paraprotein detected. Stringent complete response requires a normal light chain ratio as well. But….I have read of people on this forum who, like you, had paraprotein evident at the 100 day mark, but this continued to decrease as time went on, so…[Read more]

Thanks Jean

I am only 45 days post transplant….hope it is the right thing to be back to the bisphosphonate??? Anybody else know about this?

Carol

It is lovely to have the good blood test results, but I just wish I had more energy! I have my unit for sale too now, so have to keep everything pristine for viewings….stressful! Also, my husband is going overseas on Monday for a month, so I will be home alone. I know I will be fine, it is just that I have been relying on him for driving and…[Read more]

Hi Angela

It sure does take some time to recover from the dreaded melphalan. I still feel nauseous occasionally, soooooo tired and have to force myself to go out for a walk. After only a short distance I feel weak and shaky but must persist. I am on 2 prophylactic antibiotics (which I hate taking) but the consultant stopped the antivirals a…[Read more]

Graham you are so right. I carefully monitor all of my blood test results and become really annoyed when obstacles are put in my way. These are my results, my cancer and I want to know. I had an accidental win last Wednesday. I was unaware that Hammrsmith was monitoring my iga, paraprotein and free light chains since transplant, so had not…[Read more]

Hi Dick

That must make you anxious, but I have read on the forums of people gaining full remission even after 6 months post transplant. I never know if my results are really good or just to be expected, as even though I was really happy (especially about finally attaining a normal free light chain ratio) the consultant doesn’t really comment.…[Read more]

Hi Dusk

Yes it is daunting especially when still recovering from such a harsh process as the SCT. However, all of my family is in Australia and at 64 I am ready to retire and try to enjoy whatever years this cancer allows me. Selling in the UK is quite different from Australia as well, so I am just putting my trust in an estate agent and hoping…[Read more]

Hi Vicki & Colin

Well I am now day 40 days post SCT and am definitely having more good days than bad. All bloods are within normal range and I am eagerly awaiting day 100 when cancer markets will be checked as well as another biopsy. I am still quite fatigued but am down to 1 nap a day instead of 2, so that’s progress. I rarely sleep more than…[Read more]

I have to admit that when I was with Ealing Hospital I had to battle with the Macmillan nurse in charge of the day ward to get my blood test results. Either she would tell me they were not back (when another department had seen on the computer that they were) that she was too busy to print them; that I should wait till I come back in 3 weeks to…[Read more]

Kim

I agree with you. In my experience the NHS has been nothing but AMAZING! I have dual citizenship (Australian and British) but do not believe that Australia’s Medicare system would have provided me with the care I have had here in London. Actually, in Australia people are almost forced to take out private health insurance or pay an extra…[Read more]

Hi Angela

Great news about Graham being home. I am up to 32 days post SCT and am definitely having more good days now than bad. Still have some nausea, but no vomiting, no diarrhoea (but frequent toilet visits) but I did read that the melphalan takes at least 6 to 7 weeks before side effects lessen (5 weeks tomorrow for the melphalan). For a…[Read more]

Hi Jo
Don’t listen to the horror stories -according to my experience, it is not that bad. I have met a 10 year survivor (a super fit 69 year old cyclist) over at Ealing Hospital, who managed 8 years drug free from his first transplant. Now just imagine that! But….like any treatment with this disease it is so individual and the 2 to 3 years…[Read more]

Hi Joe
I am just 22 days post transplant and while it is not a pleasant process and I am still fighting the side effects (fatigue, nausea and vomiting) from the melphalan (high dose chemo) it hopefully will be worth the week or so of suffering for a long remission. But, like everything else with this unpredictable disease, even the SCT is a gamble.

Carol

Hi any
Which company do you recommend for travel insurance?

Carol

Hi Angela

Good to hear -so far so good….but be prepared the worst is yet to come!

Carol

Even Australia is using Velcade for front line treatment, but here in the UK, from my experience you have no option but CDT for initial therapy. The only reason surely is its cost as Velcade has been proven as more effective. Yes you can join a trial and get Velcade, but when I researched that option and asked to be referred my consultant was…[Read more]

Isn’t Violet just beautiful? I haven’t enquired about immunisations. I think they expect you to re-do all the baby ones but I don’t know when. I am seeing the consultant next Wednesday so must remember to ask.

Carol