[wendyduffieldParticipant]

After 6 months of relapsing, I have finally started treatment, is that good or bad? I have to say that over the last month or so as my light chains got to 6000 and I started to feel unwell with the effects of myeloma such as anaemia, nausea and loss of appetite, I needed to start but I was waiting for the Onyx trial (Endeavour) to open at the Manchester Royal Infirmary which compares Velcade to Carfilzomib for the 50/50 chance of getting the newer drug. The trial finally opened on Monday after much delay and guess what I got randomised to Velcade!! Just my luck as I could have started that off trial two months ago and at least had it going to work on my myeloma. I feel gutted and very down at the moment but at least I have started treatment. So first week of cycle one under my belt and hating the dex already. Plan is for 8 cycles followed by a second stem cell transplant followed by possibly a mini allo but what ever goes to plan?? So it has got to be one day at a time.

As for the triathlon, I am still doing a section of it and I posted in the off topic about that if you want to read more, its on Sunday, wish me luck!

Wendy

[MothasParticipant]

Wendy good luck, my specialist keeps saying velcade is a very powerful treatment so don't be too downhearted, you can save Carfilzomib for the future 🙂

Second stem cell transplant followed by a mini allo that's quite a treatment plan good luck with it and sending all my positive thoughts and prayers to you.

tom

[eveParticipant]

Hi Wendy

Try not to feel down,Velcade is having good results,Slim found it easier than CDT,the only thing he hated was spending so long at the hospital,but things have moved on from then,so a chance to have it sub cut.,as you know it was considered a failed drug for Slim,but I think he has moved to high risk Myeloma,as they work well until he comes off them.

What's on your next wish list???

I read your blogg,and you do amaze me ,your stamener ,good luck for this weekend, Eve

[rebeccaRParticipant]

Hi Wendy – wow you did well delaying treatment with LCs so high – I have just done 8 cycles of velcade/dex due to kidney damage and I found it did not stop me doing anything – still played tennis/gym etc did not affect energy levels much- I think you'll find your LCs drop dramatically in 1st or 2nd cycle aiding your well being – am told velcade is one of best drugs for LCs. You have a hefty plan ahead and I remember you went to see Prof Cook at St James for a 2nd opinion – was this his view also? I ask because there has been some debate re SCTing me due to kidneys at e-gfr 22-23% so had an appointment to see prof Cook last week. Unfortunately he was on annual leave but his colleuge recommended not to hesitate and they would proceed SCT ASAP – was impressed with St james and they suggest if I stay at my small hospital to be referred for a 2nd opinion prior to future treatments as my hospital wouldn't be aware of all trals etc. Was impressed. Good luck on sunday and know you will be able to keep up all your sports durung your treatment. Rebecca

[wendyduffieldParticipant]

Thanks all for your good wishes, I am getting it sub cut which is much quicker than the process before, I ring up at 9 and if I am feeling ok they tell me to come in at 1pm when it will be ready and then all done in an hour, if not feeling ok would have to go on earlier for blood tests and await the results before getting it. I had it before for two cycles and tolerated it ok.

Some short trips planned in the UK Eve after a couple of cycles to see how I am doing, nothing too exotic!

[wendyduffieldParticipant]

HI Rebecca

It is reassuring to know that you had the energy to keep up your all your activities, I have been playing tennis which is my passion but get breathless so easily even in doubles. I had to cancel a much looked forward to tennis holiday in Greece at the end of September since it falls in a treatment week and even if it didn't, it wouldn't be a good idea! I was gutted but look forward to recovering and having a knockabout. I Prof Cook who is a great guy about short team and long term strategy and whilst we did discuss mini allo after second stem cell transplant we didn't go in to too much detail as he said I didn't need to make that decision yet. You sound like you are young and fit enough in spite of kidney function to go for the transplant.

Best Wishes

Wendy

[mhnevillParticipant]

Hi Wendy

Just wanted to touch base and wish you well. I am sure you will sail through the treatment you are so determined. Hope you can enjoy life in spite of it. Shame about the cancelled holiday.

Love.

Mavis x

[rebeccaRParticipant]

Tennis is also my passion – I'm not a really good player but play in a league (we never get promoted from the bottom division – always 2nd place) and of all the things to concern myself with it is my lack of tennis that I feel most gutted about the SCT process.That's why I wasso pleased velcade did not affect my energy and could play in the summer league – altho to be fair I have very little LCs but they have caused catastrophic damage which I am told is unusual. How soon after SCT were you able to have at least a knock about please?

[DaiCroParticipant]

Hi Wendy,

Months off treatment, KLC's 6000, about to start treatment AND still up for a triathlon (part or no)… it sounds to me like you are part MM patient/part Iron Lady.

Velcade was put in its current place in the NICE approved/funded plan to prepare people for their 2nd SCT (for those that qualified/a stand alone treatment for those that didn't). It doesn't offer much of a remission period but it seems first-class at getting pp's/light chains right down, often into complete remission – and is a great preparation for a 2nd SCT. Its best work is done in the first 2/3 Cycles and then keeps it there.

I had 6 Cycles in 2011 but unfortunately I was one of the stand-alone patients and although I achieved complete remission after only 3 Cycles (plus the deletion of a secondary tumour) and maintained that status through to Cycle 6 I relapsed after only 8 weeks and moved onto Revlimid.

Two years down the road, out of planned treatments but very much alive we decided (jointly) to try Velcade again… due to its previous efficacy and bearing in mind the objective of keeping me alive as its prime objective. We had the Ist 2 Cycles as per norm… (2 infusions for 2 weeks followed by a rest week) and the switched to 1 infusion for 4 weeks, followed by a rest week… making each Cycle stretch from 3 to 5 weeks… giving me a total of 12 extra weeks over 8 Cycles.8-)

As Thomas says:

[quote]Wendy good luck, my specialist keeps saying velcade is a very powerful treatment so don't be too downhearted, you can save Carfilzomib for the future [/quote]

And I believe that he is right. Somewhere, hopefully way down the road you will have Carfilzomib (Kyprolis), Pomalidomide (Pomalyst) and who knows what else waiting for you.:-D 😎

Good luck and the best of fortune in the future.:-)

Dai.

[tomParticipant]

Hi Wendy

Well am pleased you have started treatment and sorry you didn't get what you wanted..
Good Luck with it Wendy and fingers crossed you get through this with few side effects.

Love Tom Onwards and Upwards xxx

[wendyduffieldParticipant]

Thanks all

I had my final shot of velcade today and that is the end of the treatment for my first cycle apart from the dreaded dex tomorrow then 10 days off, hurray. Managed my part of the triathlon on Sunday (see off topic) with no ill effects,relieved it is all over though. Got a cough and cold and have been diagnosed with steroid induced diabetes,whatever next? Anyone else with experience of this? They are keeping an eye on it and I cant have any cake >:-(

Rebecca, you asked how soon you could play tennis after your transplant? I don't know, I guess if you make a good recovery you could be knocking up after 2/3 months. It was coming into winter when I had mine and I wasn't playing much around that time anyway but I did go for gentle hikes and cycle rides.

All the best

Wendy

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