[hcp1Participant]

Hi all

I had my appointment with the consultant last Thursday and am having a bone marrow biopsy on Tuesday. SCT is still planned for mid to late October.

When I asked about the benefits of SCT and the average length of remission I was told that the data that suggests an average of 18 months is already out of date as much of the treatment has changed! It is hoped that longer remissions will be achieved but yet again I was reminded that everyone is different and it is impossible to predict individual outcomes. I was told not to get too hung up on numbers (which I find hard not to) as what is more important is how well you respond to treatment.

Charlie – I live near Broadway, north of Cheltenham.  A little less localish?! Do you have a date now for your stem cell harvest?

Toby – from what I understand the paraprotein is the whole structure which includes the heavy chain and the two light chains (kappa and lambda). I have free lambda light chains.  Still don’t perfectly understand it all but I guess it’s the bone marrow biopsy that gives the best information on how much disease is still present and therefore how much it has reduced as a result of treatment.

All the best

Helen

 

 

[hcp1Participant]

Hi Charlie

The iceberg is a great way to explain it!

I hope your appointment goes well on Thursday and you get to enjoy your friends birthday celebrations! I’m hoping that my treatment will allow me to celebrate my daughters 21st birthday on October 8th. I think the timing should be just right.

Where are you having your treatment? I will have the stem cell harvest at Southmead, Bristol and then the transplant in Cheltenham. Just wondered if you were from this area?

take care

Helen

 

 

[hcp1Participant]

Hi Charlie

I am about to finish my fifth and final cycle of VTD this week before a SCT which is likely to be late October. I see my consultant this Thursday and one of the questions I had planned to ask him was what the options are if I chose not to have the transplant. I was diagnosed in April this year and had 3500 lambda light chains and my bone marrow biopsy showed 55% abnormal plasma cells. The light chains have now come down to 291 and I guess I will have another bone marrow biopsy to measure the abnormal plasma cells before the transplant.  I  have never been given PP readings so can’t compare. I must admit I still don’t understand all the different ways in which Myeloma presents. I still feel it is all so new yet here I am getting ready to prepare for a SCT. All a bit scary.

Although I want to understand all the options available to me I am sure I will go ahead with the SCT as it has been explained that this gives a longer and deeper remission. I was going to ask about the length of remission gained but from Dusks post and from what I have read it does look as if the average is 18 months to two years. Much shorter than I at first realised. Part of me thinks is it worth going through for a relatively short remission?  But surely it is – to be drug free will be wonderful and there is always the possibility that we could be one of the ones who go into remission for 5/10 plus years! I know it’s impossible to predict how each persons Myeloma will develop and progress. This is one of the most frustrating aspects for me.

I wish you and Toby all the best and as I appear to be ahead of you both in treatment I will keep you posted with any new information that comes my way.

Helen

[hcp1Participant]

Hi Ben

I am being treated at Gloucester Royal. I was diagnosed in April and have been under Dr Shields who I believe is the Myeloma specialist for glos/chelt. I see him every four weeks in clinic and I have a named specialist nurse who I can call at any time. She also runs a Myeloma support group at the Maggies centre in Cheltenham once a month. I can’t fault the treatment I have received so far. All the nurses and doctors who work at the Edward Jenner unit, where I have my chemo, greet me by name and always remember where I am in my treatment and take time to talk through any problems. I live closer to Cheltenham but chose to stay with GRH as that was where I was diagnosed after a week on the renal ward.

I am on Velcade, Thalidomide and Dex. I had very few problems for the first three months but am increasingly tired at the moment. I have a four week cycle. Two sessions of velcade each week for two weeks followed by two weeks off. I take one Thalidomide a day during the velcade weeks and then two a day during the two weeks off. Dex just on the day of velcade and the following day. I have responded well with my light chains coming down from 3,550 to just over 400 so far and my kidney function returning to almost normal. The current plan is one more cycle and then due to have my SCT in Cheltenham Oct/nov. This will all be confirmed when I see the consultant this Thursday.

I will be interested to read how it all goes for you at the Marsden this week.

Best wishes

Helen

[hcp1Participant]

Hi Mervyn

Good to hear that you are now back home and I hope your strength and energy return before too long. Thank you for taking the time to share your early experiences of SCT. I have read the article you recommended.

I see my consultant next Thursday. I know I have one more planned cycle of VDT to go before my SCT but I am hoping he doesn’t suggest an extra cycle as I want to be in between treatments for my daughter going off to Uni, her 21st birthday and my son starting a new school for sixth form! And a short break in Scotland if I have the energy.

best wishes to you

Helen

[hcp1Participant]

Dear Mervyn

What you have taught me so far – not to have any expectations and to take each day as it comes but know that each day takes you closer to the end of your stay in hospital.

I really do hope that today proves to be an improvement on yesterday.

Helen

 

[hcp1Participant]

Hi Mervyn

Please don’t feel you have to write each day. Save your strength for getting better. Catch up when you can.

It all sounds pretty rough but I guess we are warned it is likely to be that way. Although it sounds as if everyone’s response is unique to them.

Thanks for taking the time

Helen

[hcp1Participant]

Hi Mervyn

Hope all going as well as can be expected. Thinking of you.

Helen

[hcp1Participant]

Hi Mervyn

I am on my fourth cycle of velcade, dex and thalidomide and due to have a SCT October time so I would be very interested to read of your experiences. I must admit it’s the part of the treatment that I am nervous about.

Good luck for Tuesday. I will be thinking of you.

Helen

 

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