[CarolsymonsParticipant]

It is just so sad to read these posts. Give your children time and help them to remember the good times they had with their dad. Such a cruel, unforgiving disease.
Carol

[CarolsymonsParticipant]

Your dad was always so positive, so sad to hear this news. He was just too young to die. This cancer is just too, too cruel. I am sure you have loads of lovely memories to keep you going.

Carol

[CarolsymonsParticipant]

I don’t know about B12 but I was vitamin D deficient for some years and wonder if that contributed to my diagnosis. No problems with vitamin D now I am home in Australia!

Carol

[CarolsymonsParticipant]

You will find quite a lot of people on here with kidney failure. The free lite test is the most important in your case as it will give you the kappa and lambda free light chain numbers, especially has there has been no paraprotein. Even more important is the free light chain ratio. Ask for all of these results…sometimes takes a week for them to come back from lab. I always ask for a printout of my blood results so I can keep track. I have iga lambda but no kidney failure. I wouldn’t stress too much about not having a transplant as many people seem to stay in remission without it. In fact in the USA they are delaying transplant in some cases.

Carol

[CarolsymonsParticipant]

Post traumatic stress syndrome is often a by product of what we have been through. Some find counselling helped. My move back to Australia and endless sunshine and surf have helped me deal with the depression I was struggling with after transplant in London.

Carol

[CarolsymonsParticipant]

Hi Mervyn
I know of people who have had 3 SCT’s but for me I was desperate to be drug free and the SCT achieved that. After I finished the initial treatment with a good response, my light chains started rising again so I would have been back on velcade (probably) straight away. Also I think it was better to have the SCT early on when I was still strong. Still not sure if it was the right decision, but I am 65 now and 13 months in remission, off to the gym and swimming most days back home in sunny Australia. Also just booked a 3 month trip to travel Europe in May.

Carol

[CarolsymonsParticipant]

First of all welcome and I know how you feel. I thought I was the fittest 63 year old in London till diagnosis! Sounds like you are doing really well. It is true the SCT lays you low for a couple of weeks and it does take quite some time to recover. But if you can gain a good remission and be drug free for a while I think it is well worth it.

Carol

[CarolsymonsParticipant]

Hi Gill
Good to hear from you. Bless Stephen…I guess he knew how much you would think of him as you used the sharpener. Do hope after the tears you picked yourself up and got on with living, as you know that is what Stephen would want for you. I sometimes wonder how my husband, children and grandchildren will remember me once I am gone?

Carol

[CarolsymonsParticipant]

As Tony said if your husband is mobile there is no need for you to be at home all day. I managed to keep doing everything for myself (I have mm) and my husband, except for the last 6 weeks of the initial treatment and a couple of weeks after transplant. Everyone is different I guess but I would not advise you to give up work.

Carol

[CarolsymonsParticipant]

Hi
Stay home as much as you can after you have the chemo for stem cell collection as it will damage your immune system. Even more so with the melphalan before transplant. SCT is not too bad if you can manage to avoid infections in my opinion.

Carol

[CarolsymonsParticipant]

Hi Stanley
You will only get shingles if you had chicken pox previously. No chicken pox no shingles! Luckily I have never had them so thank goodness shingles is not on my agenda. Were you taking acyclovir?

Carol

[CarolsymonsParticipant]

Hi Alan
The first chemo before collection is not as severe as the melphalan. I still think you need to be careful and stay at home as much as you can cos it will knock your immunity down. Usually once your counts drop with the melphalan before transplant you will become neutropenic and be at great risk of infections.

Carol

[CarolsymonsParticipant]

Unfortunately it may mean more chemo to get them back into a normal ratio. Light chains can clog up kidneys so make sure auntie is drinking plenty of water…..2 to 3 litres I was told.

Carol

[CarolsymonsParticipant]

Hi
You need to ask for the light chain ratio. Unfortunately if it is out of normal range it would indicate that your aunt has relapsed. The light chains as well as the paraprotein are both measures of the myeloma activity. The consultants like to have both in the normal range before transplant.

Carol

[CarolsymonsParticipant]

Hi Charlotte
I can understand your frustration. My numbers were also low on diagnosis and I had a good result after 4 cycles of CDT. However the consultant insisted that I complete 6 cycles as that was the protocol. It is annoying that they just follow protocol when your body is being pumped full of poison. However I complied….well mostly as I did skip the last few weeks of cyclophosphamide as I was feeling so wretched. I think you just have to keep pushing for answers which I know is darn difficult when you keep seeing different registrars. There are lots of drugs available and really drugs are all the doctors can offer. However I have luckily had 12 months of remission after SCT so I feel positive about the future.

Carol

[Author]

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