[KevinLParticipant]

Having been diagnosed in July I have just completed three shortened cycles of CTD. My light chains and bone marrow biopsy show a return to normal and I'm booked in for stem cell harvesting on 29th October.

I wanted to share this good news with anyone who is going through the CTD and suffering from the rather random side effects – it is worth it. There were many times I asked myself that question as the DEX caused severe depression and anxiety that I wondered whether it would clear once completed. I'm pleased to say that within a week of completing the last cycle I was feeling much more normal and energy levels starting to increase.

I know stem cell transplant will bring it's own challenges but to anyone currently suffering on CTD my message is keeping going, is works and the side effects will pass.

Regards,

Kevin
Sussex

[jmsmythParticipant]

Hi Kevin

Glad to hear your good news and wish you all the best for SCT. We have just coming back from consultant. Frank just finished his 5 th cycle of CDT. For the past two months his protein has been stuck at 2. Did your protein drop to 0. I'm worried that as its not 0 they won't do SCT. sometime trying to get info from professionals is like getting blood out of a stone.

Kind regards
Jean

[LornaParticipant]

Hi Kevin

Well done! It's no easy task getting through all those dex days and the days of withdrawal that follow.

Jean, Mike (my husband)had a pp reading of 11 after 8 cycles of Velcade, Dex and Cyclophosphamide and they still went ahead with the collection and SCT. He had his SCT on Christmas Day 2010 and is still doing well.

Lorna

[KevinLParticipant]

Hi Jean

For reasons I never understood they weren't able to use my Paraprotein levels to measure the MM and always worked on the light chains. I know this was unusual. Sorry can't be more help.

Don't be afraid to ask them the direct question about whether the levels need to be zero before SCT – sometimes they won't say unless you ask directly!

Hope Frank is soon at a level where SCT can commence.

Regards

Kevin

[jmsmythParticipant]

Thanks for that Lorna. It's a relief to know that they might still do it and I'm glad that Mike is still doing well and long may it continue.

Kevin they said light chains and everything else was good. I did ask the question but it was yet another registrar. I'm thinking of getting a tape and recording answers to all the same questions that each different one we see asks. When I asked she said that we would have to see consultant next month. My nerves will be wrecked by then. Our myeloma nurse was in with us and she saidvif I was concerned I could ring her on Wednesday to find out what the protein level is this month. Have you a date for SCT?

Best wishes to you both
Love Jean

[meganjaneParticipant]

Hi Kevin,

Great news about your light chains and bone marrow biopsy and it is nice to hear that the side effects went away once you finished treatment. My husband Phil is on his 6th and final cycle of dox-dex-velcade and he has had a few new side effects pop up in the last week that we are hoping will disappear after he finishes this cycle.

Jean – my husband Phil is on a different type of treatment to Frank but part of the clinical trial he is taking part in is seeing if the use of Velcade in the first line of treatment can delay the need for a Stem cell Transplant. In order to delay the stem cell transplant his paraprotein levels need to drop 90% (so in Phil's case down to three), if the paraproteins reach this level they will monitor him and delay the transplant until the levels start to rise again but if he does not get down to three we will go ahead with the stem cell transplant immediately. As Frank is already at 2 I don't think there will be any problem. Zero is the ideal but I don't think many people actually get their levels that low. Hopefully your Myeloma nurse will be able to confirm this for you.

Megan

[jmsmythParticipant]

Thanks for that Megan. The more info I can get the better so I can have questions for the nurse on Wednesday. Hope Phil's side effects disappear. Frank is having ad side effects and withdrawal from the Dex. I think the thought of aving to continue CDT is really upsetting him.

Thanks again
Regards Jean

[PeterJamesParticipant]

Hi Kevin
I have just started my final sixth cycle of CTD , the dex really hypes me up & gets rid of all arthritic bits for four days , then a bit lacking in energy for two days after , everyone is very different
I also look forward to coming off the poison pills & getting back to normal, if it only takes a few days that will be great
Hopefully for a SCT in Jan
Then back on track for as normal a life as possible
Peter

[tomParticipant]

Hi Kevin Am sure that will be a help for those that are due or just starting CTD and if i may add that I concur with that 😀 and for you and those like you comming up and due to a SCT I can tell you I had mine done in December 2009 and Like your and mine CTD the SCT is well worth it.

I am here nearing 3 years post Transplant and feel Great 😎

Tom "Onwards and Upwards" x

[VickiParticipant]

Well done Kevin, we all love good news stories!

Jean, I'm pretty sure they don't have to get the pps down to zero. I think one of the key indicators is this balancing of kappa and lamda (there is this ratio but I can't remember what it is). They look at treatment scores form example waiting for the pps and light chains plateau, or that the side effects on the body become too much.; for example in colins case his pps and light chains kept coming down (for Which we were v v v grateful) so they kept going with the treatment until it looked like colins body was starting to struggle (in the last couple of months it took longer for his marrow to recover to move onto the next cycle.) so they stopped it then. In short scores don't need to be zero 🙂

Hope Frank is feeling a bit better 🙂

Vicki and Colin x

[jmsmythParticipant]

Hi Vicki

Every month I get Franks readings and try to make snse of them. Last month PP wa 2, Kappa light chain 10.1, lambada light chain 7.6 an ratio1 .33 this month readings were respectively PP2, KLC 8.3 LLC 7.5 ratio 1.11. So I am assuming that as consultant doesn't seem worried that this is fine. In 6 years Frank has only had 1 bone marrow biopsy and that was when he was first diagnosed. Will have to wait till Wednesday to talk to Jackie the Myeloma nurse

Thanks for the information and I hope Colin is well

Love and best wishes to you both
Jeanx

[DebsParticipant]

Hi jean

PP levels definitely don't need to be zero…they were going to do mine when mine were at 28 still!! And they had only halved from 50! I am pleased that I got down to 8 when I had my transplant, but 0 definitely shouldn't be a requirement. They probably just want to check he has plateau'd before they make the decision…but I would imagine now they would be seriously thinking of starting the transplant process.

I don't really get the other readings, but I would ask to speak with the top person next time and ask for a date! Sometimes you just have to push them!

Good luck!
xx

[eveParticipant]

Hi Kevin
Just come on to say good luck with your SCT,it is hard going but like most things you will feel better just takes some time.Eve

[DaiCroParticipant]

As far as I understand it the medics look at the ratios for overall guidance and if the PPs or Kappa Light Chains are acceptable they will press ahead with the SCT process . 🙂

There are parameters of which 0, Nil, Zilch, Zero, nothing… are the ultimate base camp aim…. with an upward level which has been set as the acceptable level of the parameter. I.e. they may say that they are looking for 0 but will accept any level between 13 and 0 for the next treatment to commence. I imagine that the parameter settings are dependant on the person, their particular history and expectations. 😀 😎

Again, from what I can ascertain, the starting blocks numbers of readings and ratios have no bearing on either the success of the SCT or the length of the remission…. 😎 🙂

Whatever.. you have qualified… Enjoy :-S 😛 :-0 – 😀 😎 🙂

Dai.

[Author]

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