[bandityogaParticipant]

Hi all

Ian’s FLC are now, Lambda 11 and Kappa 8, he is 3 months post SCT and hopefully he will get a long remission. We are very happy and off on holiday to Ibiza soon.

It has been a hard struggle for us and happy Ian is feeling a lot stronger and mobility has improved greatly, he now walks with one stick but doesn’t need it in the house.

Maureen

[DizzylizParticipant]

Hello Maureen,

Wow! What fab news for you both, I hope I’ll be posting the same news about kev in 3 months time? Have a fantastic holiday and Ian continues to get stronger! Kevs on day 3 from SCT showing signs of all the niggles creeping in but he’s coping well!

Keep well both of you and go enjoy your hols!! Love Liz & kev xx

[HelenRParticipant]

Hooray! Wishing you both a long time with myeloma as far as possible in the background after dominating life for so long! Make hay while the sun shines, gather ye rosebuds while ye may and all that 🙂
Helen x

[stanley-1960Participant]

Hi Maureen,

Ian’s free light chains at 3 months is fantastic news. You must be thrilled. Please pass on my best regards to Ian. Have a great time in Ibiza.

All the best,

Stanley

[janwParticipant]

Hi Maureen

Terrific results for Ian. You both must both be so happy about the results. Enjoy your holiday in Ibiza.

All the best
Jan

[mhnevillParticipant]

Hi Maureen

So glad that things have turned the corner for you and Ian. Who would have thought it when Ian was so poorly and distressed in the early day after diagnosis.

Here’s to the future.

Best wishes.

Mavis

[bandityogaParticipant]

Hi all

We had a lovely holiday in Santa Eulalia in Ibiza. We both really enjoyed relaxing by the pool and Ian got into the pool for the first time since diagnosis, he can only swim back stroke as his spine is damaged but it gave him great pleasure to be able to get into the pool.

Jan

So sorry to hear you have relapsed but hopefully velcade will get your FLC down to normal. Will you get another SCT?

Hope you are all well.

Maureen x

[janwParticipant]

Hi Maureen

It’s such a good feeling when you are able to go away and relax on holiday following successful treatment. I’m glad you both enjoyed yourselves in Ibiza, especially with Ian managing to spend some time swimming. Since my vertebrae collapsed, I find it impossible to sleep on my front or swim breast stroke/front crawl. Like Ian, I find it easier to either swim back stroke or swim on my side.

Many thanks for your good wishes. Hopefully, I will be able to have a second SCT depending on whether Velcade manages to reduce my light chain levels. I realise Velcade can cause fatigue, but it’s the cylophosphamide side effects which I’m also not looking forward to suffering again. Last time with this drug, I had so many unpleasant side effects of severe nausea, tiredness, mouth ulcers, cystitis and breathlessness, all of which caused me to dive under the duvet for the last two of the four cycles. I’m busy enjoying my last week of freedom, before the drugs start next Monday!

Jan x

[jane-wrenchParticipant]

Hi Jan,

what level did your free light chains reach before they said you needed treatment again? Ive had Amyloidosis as well as myeloma for years now – nearly twenty in fact – had 2 stem cell transplants but last time it came back in 2012 had velcade mixed with various other drugs which got me into remission again  without SCT – but it looks like the dreaded light chains are rising again already after only a year of remission – am monitored by both Marsden and royal free but both say it’s a question of ‘watch and wait’.

xx

 

[janwParticipant]

Hi Jane

You must have been so relieved to have achieved two good lengthy periods of remission following your two SCTs. Hopefully your light chains might only slowly increase after your last treatment, which would give you more years of remission. Had you previously used Velcade as part of your SCT treatment? What happened to your light chain levels after your two SCTs? What are your levels now?

Because my three vertebrae collapsed when my light chain levels were 2,300, then my consultant has always advised me that further treatment would be necessary if my light chains increased to beyond 1,000/1500 and/or my body showed other issues such as kidney damage, low iron levels, increased bone pain or constant infections/virus.

Following my treatment and SCT in 2010, my light chain levels reduced from 2,300 to under 30. For the initial 18 months, I was monitored every three months with my levels showing a very gradual increase to around 200 after one year, then 400 after 18 months. Shingles suddenly increased the levels by 300, but then reduced once my body recovered. Like you, I was then placed on a ‘watch and wait’ basis with monitoring visits to my consultant reduced to every 8 weeks. Rather than a gradual increase in levels, my light chains began to see-saw quite a bit, with my numbers going up and down by 100-200, but still with a gradual trend to increase.

Apart from a couple of colds, the flu and shingles, then my general health has been good over the past five years. I’ve experienced no further bone damage, or kidney problems, or low iron levels. My blood test results show no problems. I’ve had low neuts since diagnosis, but I don’t know what my levels were before myeloma. However over the past year, my light chain levels appear to have become more volatile with increases/decreases of around 500, reaching 1,900 at my last consultation, which could mean my myeloma is becoming more unstable. Both my consultant and myself are worried that if my levels increase to over 2,000, this might trigger further possible bone damage. Therefore a decision was made to start treatment with a view to try another SCT early next year.

Hopefully, you still might have a long time before you require any further treatment.

Jan x

[bandityogaParticipant]

hi Jan

Hope the treatment isn’t too harsh for you. Ian had velcade but only with dex. It worked for 3 cycles then FLC started rising. I asked for cyclophosphamide could be added and even got a second opinion but we were turned down and Ian went onto Revlimid and dex. It worked again for only 3 to 4 cycles but reduced Ian’s FLC to 500, no cyclophosphamide again. We were told by one consultant that he would not get a SCT as he was refactory but I asked another consultant and he was referred to Glasgow. His bone marrow results today were 5% plasma cells (what is the normal level?) and lambda steady at 11 and kappa 8. I do not know how our hospital could not give Ian cyclophosphamide but was advised that it wasn’t their practice. I feel we wasted 2 treatments and I hope that Ian has a long remission, enough for more treatments to be passed. Ian also had bad side effects with mouth ulcers, fatigue and nausea but it did work.

Wishing all the best Jan and hope velcade works for you and you can get another SCT.

Maureen x

[jane-wrenchParticipant]

Thanks Jan.  My first SCT was in 1996 when my light chains were 5,500- and I had 5 years of partial stable remission- then another SCT in 2001 and my light chains were ‘normal’ for years, but gradually but steadly increased from 2010 and I started velcade with cyclophosphamide and dex in 2012 and later thalidomide replaced cyclophosphamide. The light chains went right down for a while but are slowly increasing now – I go to Marsden every 8 weeks and they are have gone from 11 to 32 to 67 in the last 3 visits. Last time they started talking about treatment when they reached 500 although they’d got to 850 by the time I started the velcade.  I think they are more worried about the amyloidosis as if it gets into the heart or other organs it’s very serious. All my other results are ok and I feel physically fine – but obviously something’s going on inside!

im sorry that you are starting treatment again- it seems so harsh when you feel ok! These free light chains have a mind of their own!

i wish you all the best with the treatment- good luck.

jane x

[HelenParticipant]

Dear Maureen
I’ve not been on here for a while but I’m delighted to hear that Ian is as well as this, you must be very relieved and happy. Get all those holidays you missed booked and enjoy the sunshine.
Love Helen

[janwParticipant]

Hi Maureen

You both must have been so frustrated when Ian was not allowed cyclophosphamide with his Velcade drug regime. From the last four Myeloma UK Information days which I have attended, one of the main messages from the consultants always appears to be that a mixture of three drugs is better than two drugs when treating myeloma patients. Do you think the two drug policy is Scotland’s approach to treating myeloma? If you haven’t already spoken to Myeloma UK about 2 or 3 drug regime in Scotland, then I would certainly find out some more information from them. It must be so frightening when you use up two available drug treatments in such a short period of time, especially with all of the debate about whether the newer drugs will be available for forth line treatment. But, the good news is that Ian’s light chains are now under control and hopefully he will achieve good period of remission.

Interestingly, the upcoming MUK seven clinical trial appears to be looking at the use of 3 or 2 drug regime for Pomalidomide. The trial is going to compare Pomalidomide and dex compared to Pomalidomide, dex and cyclophosphamide for relapsed/refractory myeloma patients. To be eligible for the trial, patients must have been treated with a proteasome inhibitor and lenalidomide. Presumably with Ian living in Scotland, if he needs Pomalidomide in his next drug regime, then Scotland and Wales are currently financing this drug but not England.

Commencing the drug regime this week has certainly raised some negative memories of my first CDT treatment. It’s the way the mixture of drugs messes around with your body, your emotions and side effects, but you know it’s all necessary in order to try to get the myeloma back under control. The dex night kicked in last night, which combined with the first night of my regular 3 day pain patches of Fentanyl, which also causes me lack of sleep. My head feels so light headed and the fatigue has kicked in. The nausea raises its head at night, but is controlled during the day. The first Velcade injection site has a lovely golf ball size red sore patch. Fingers crossed, my body will get used to some of these different tablets and settle down during the one week off.

Jan x

[DizzylizParticipant]

Hi Maureen,

Great to hear you had a lovely holiday and here’s to many more!

Keep well love Liz & kev xx

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