[angeParticipant]

Hi Dawn

Sorry you have had to start treatment but glad to hear you have got through the first cycle! I had CDT and it did take a while longer before the full effects kicked in with me and I had to give up work and driving etc. You will know you feel and adjust to give yourself the best chance of the treatment working. Good luck and hopefully you will get through it reasonably well!

How are you doing Peter? Is the Velcade having any further effect and is there any talk of SCT yet?

It is 5 weeks since my SCT and paraprotein after transplant was 12.1 (12.9 before). I just had another course of CDT before transplant so at least I still have Velcade for the future. Regards to Ian and everyone else too!

Best wishes
Andrea

[pc452Participant]

Hi Dawn, Andrea, Ian and All,

What a shame you’ve had to start treatment, Dawn. I was a bit fed-up when my MGUS diagnosis changed to Myeloma last June. I, too, was on CTD; six three-week cycles, back to back, and didn’t actually find it too much of a problem. I had a couple of odd rashes early on, that came and went away within a week or so. I also woke up one morning with a sore watery eye, that sorted itself out but left me with slight dipolopia (double-vision!), but only when I roll my eyes up to their extreme upper left position, so It’s not a problem. Finger tips felt a bit “dull” at times, too, but nothing much and not problem. So, I hope you mange the treatment without too much problem, too. People’s reactions do seem to vary so much.

I had some better news from the hospital recently, Andrea. The paraprotein level has started to go down again; down to 8 on 9th March (end of 3rd cycle). It’ll be another week before another test result – more finger crossing! But the other good news was that the Serum Free Light Chains had gone down to 71.4 on 27th Feb. from 217 in December. (I think different labs. use different units, so I’m guessing that’s why my results look so low compared with Dawn’s 7000!) So my Myeloma is responding to the VCD treatment, thank goodness! I’ve just finished Cycle 4 today, probably looking at another two cycles then “we’ll see what your results are like”. So could be SCT towards the end of May; but, as ever, it’s wait and see!

How’s your recovery going, Andrea? Hoping your energy levels are improving, and you are able to be more active again. I seem to recall that you said you were quite lacking in energy when you first got home. That must have been very frustrating for you.

Hope you are continuing to do well, Ian. I found something in one of the web links you gave me about the subcutaneous injection of Valcade that I raised at my hospital unit and changed practice there!! I’ll put a post in the Treatment section of the forums so that it can be found more easily.

Best wishes everyone; keep on keeping on!

Peter

 

 

[cartdawParticipant]

hi peter glad things are improving for you, feeling fine except I feel really shaky and dizzy mainly until lunchtime not sure if its the thalidomide which I take at night or the days off when I don’t have the dex.  Its just my first week so im not sure what to expect.

[iangParticipant]

Hi Peter, Andrea and Dawn

Peter, here’s hoping your pp continues on a downward trend. My consultant was quite keen to move on to SCT when my pp seemed to be plateauing after 4 cycles of Velcade (which I was switched to after the initial 4 and a bit cycles of CTDa) and didn’t continue with the Velcade to see if the pp might go down any further.

It’s interesting you managed to change hospital practice re injecting Velcade. I was tempted to print out the relevant pages and take them to show the nurses, but then I thought they might think I was telling them how to do their job. Perhaps I should have done it anyway. When I now try the first link in my January 5th post, I see the document has changed. The advice is now on page 4. Unfortunately I can’t update that post, there must be a time limit on edits. There is more extensive advice about avoiding injection site reaction in the document in the second link.

Andrea, how soon after SCT did they measure your pp? It can take a while for pp readings to drop, IgG in particular has a half life of 23 days. I think I’ve seen people say theirs continued dropping beyond day 100. Anyway I hope you have a good response. My pp went up after my SCT and has continued rising a bit erratically, so my myeloma cells must be resistant to melphalan, and the title of this thread (topic) is very apt in my case. Still, I’ve had 6 treatment-free months, which has been nice. Now my pp has reached 30g/L and I will probably be starting Lenalidomide (Revlimid) treatment soon. There was talk of going on the Pollux trial but then I was told it was fully subscribed.

Dawn, I’m sorry to hear your disease has progressed to active myeloma. My side effects from CTDa (attenuated CTD, i.e. half the usual dex dose) were mostly not too bad. I developed quite bad acid reflux early on, so the omeprazole I was taking on dex days was increased to daily to treat this. The acid reflux stopped. I’m still taking omeprazole daily. I also gradually developed fairly mild peripheral neuropathy in my hands, particularly my fingers. It declined slowly after the CTDa treatment finished but I’ve still got a very small amount in my fingers. I’ve also got some residual pn in my feet and round my knees from the Velcade treatment. I think I had constipation briefly each week, I definitely had it when I was on Velcade. I recall I felt a bit thick-headed, but whether it was due to the myeloma, the treatment or lack of sleep (I tend to be a bit of a night owl) I don’t know.

If you’re concerned about risk of kidney damage, do you get your blood test results? The creatinine level and eGFR both indicate how your kidneys are doing. Low creatinine is good. The eGFR is an estimated GFR based on your creatinine. High eGFR is good. 90ml/min or more is normal, 60 to 89 indicates mildly reduced kidney function but is also considered normal. Some labs report values over 60 as >60. If your eGFR is below 60 I suggest you ask your consultant about it, but if you want to read about it you could look here:
http://www.nhs.uk/Conditions/Kidney-disease-chronic/Pages/Diagnosis.aspx

There is a Myeloma UK Infoguide about how myeloma can affect your kidneys:
http://www.myeloma.org.uk/information/myeloma-uk-publications-list/symptoms-and-complications/myeloma-and-the-kidney/

Best wishes to everyone.

Ian

[angeParticipant]

Hi Peter, Ian and Dawn

I am now 6 weeks post SCT and starting to feel alot better. If I go back to bed after breakfast and doing the essential household chores I read my book and then get up about 12 pm, go for a walk and then I am fine for the rest of the day. My youngest daughter is revising for her GCSE’s so it is lovely to have time home with her helping her revise, going for short trips out and watching tv in the evenings.

Peter, hopefully you will progress to transplant soon, it is frustrating having to have further treatment but you seem to be coping well.

Ian, in answer to your question the paraprotein reading after transplant was on 9 March (transplant 19 February) so it is early days. I do have IgG kappa myeloma with ‘high risk cytogentics’ or ‘moderately poor cytogentics’ with deletion 13q and addition 17p. In the near future I expect treatment will be individually tailored to the patient based on their status rather than trial and error! I will have my next result on 14 April so it will be interesting to see if it does go down lower over the next few months. It is good that you have enjoyed 6 months treatment free but disappointing for you that your paraprotein have risen and treatment may be needed gain soon.

Dawn, hope you are coping with the CDT. I did feel shaky and dizzy too, horrible feeling I felt spaced out while walking around and quite out of it at times. I think I coped better with the SCT than the CDT!

Anyway, best wishes to everyone.

Andrea

[iangParticipant]

Hi Andrea

I’m delighted that you’re doing so well and enjoying life back home. Long may it continue.

It sounds like your myeloma is somewhat similar to mine. I’m IgG Kappa like you, and I was 1q+ and t(11:14) at diagnosis. My 1q gain and your 13q deletion are both intermediate risk in the Mayo Clinic’s mSMART classification of relapsed MM. My t(11:14) is considered benign and I think your 17p gain probably is too, odd number additions normally are, apart from 1q+. But a gain in chromosome 17 seems to be unusual, I haven’t seen it mentioned anywhere. It’s about 18 months since my one and only FISH test so I might have had more cytogenetic hits by now, plus I assume my lack of response to my SCT moves me into the mSMART high risk category. 

Re individual tailoring of treatment, it’s interesting stuff, there seems to be quite a lot of research work going into genome sequencing of myeloma cells. There’s a bit about it in the ASH conference report that was bundled with the latest Myeloma Matters. I guess the challenge will be correlating genome results with effectiveness of treatments and treatment combinations.

Good luck with your results later today.

Take care, Ian

[angeParticipant]

Hi Ian,

Thanks for your kind message, I was very happy at yesterday’s clinic appointment to be told that that my paraprotein had dropped from 12.1 to 10.6 so my consultant was pleased with that. She said it may not drop much below 10 but it is more important that it stays down. I looked at the Mayo Clinics sMART classification and that was interesting. However awful it is to have myeloma and treatment I do find it very interesting how individual it is to each person. My cytogenetic test was February 2014 and I am glad I have that information, I always want to know as much as possible!

Hi Peter and Dawn, hope you are both doing okay.

Best wishes to all

Andrea

[pc452Participant]

Hi Andrea. Ian and Dawn,

Brilliant that your PP has gone down, Andrea. Hope it stays down for a long time! You are sounding good in your posts, so I’m guessing you are feeling much stronger.

Unfortunately, my last PP test showed a rise again, from 8 to 9g/l. However, I don’t get any decimal places quoted, so I suppose it could have gone from 8.9 to 9.1! And, as Ian says, the IgG heavy chain molecules have a long half life, (I’m IgG, too, but with Lambda light chains) and I guess Myeloma isn’t necessarily going  to be co-operative and come down in a nice smooth curve. So, not too perturbed at the moment.

Should be starting a sixth cycle of VCD on Tuesday and won’t get another PP result until a week after that. Not sure what the plan might be if the PP has got stuck again, or continues to rise.

Have had a chest infection for the last few weeks, too. Feeling ok but currently on a second course of doxycycline trying to wipe out the bugs! So, no clear plan in place just now, and feeling a bit “adrift”. Seeing the consultant next Tuesday, so may get some indication then.

Sorry to hear you are likely to need to start treatment again soon, Ian. Hope you myeloma responds to it. Will it definitely be Revlimid, or are there other options open?

And how is the CTD going, Dawn. I do hope it isn’t causing you too much of a problem. I think I felt a bit woozy at times, too but, like Ian, I’m a bit of an “owl” so my problem could have been lack of sleep, too, especially as my wife is a “lark”!

At least we have had some very pleasant weather lately!

Best wishes to all,

Peter

 

 

[cartdawParticipant]

hi andrea,  ian and peter.  hope you are all well and coping I have just completed my 2nd cycle of cdt and my paraproteins have gone down from 29 to 8 already.  hope they stay down fingers x.  but im not taking anything for granted.  havnt got the light chain results back yet so im hoping they have gone down as well.  I can cope with the thalidomide and the chemo but the dex on 3rd and 4th day makes me feel unwell but can cope with it.  Iam IgG too but im not sure if iv had a cytogenetic test  it hasn’t been mentioned.  I will mention it at my appt tomorrow.    look after yourselves   dawn xxx

[pc452Participant]

Hi Dawn, and all,

That’s excellent, Dawn!  Sounds like your Myeloma is responding well to the CTD. Keep it up!

I’m not sure if the cytogenetic testing is done for everyone, or only certain places or in special circumstances. No-one has mentioned it to me here. My wife and I are going to the Infoday in Newcastle on Saturday, so I’ll ask the question. Or maybe Ian, or Andrea, would know?

I’m still bobbing about in the Seas of Uncertainty! On the VCD regime my PPs have gone down from 12 to 8, then back to 9, then to 10. But at the same time my serum free light chains went down from 217 to 71.4 to 131 then back down to 103! My consultant thinks we may have been checking too often, and have seen “wobbles” that otherwise may not have been evident, so he’s not convinced that my Myeloma is “progressing” (i.e. getting worse) as I still appear to be responding to the treatment. He’s discussed my situation with the MDT at Newcastle, and I don’t think they feel too sure about what’s going on either. So, the plan is to finish this 6th cycle of VCD (another week) test again, and if it still doesn’t appear as if the Myeloma is progressing , to go back to the MDT and see how they would feel about going ahead with my SCT. Otherwise. I think they’ll be trying me on the Revlimid!

It’s all very fascinating, but I wish the tricky beast would just behave itself.

Take care everyone. I’ll let you know if anything particularly interesting comes out of Saturday’s event.

Best wishes,

Peter

[iangParticipant]

Hi Peter, Dawn and Andrea

That’s a great response Dawn. I should think it’s still got some way to go judging by the amount the pp has fallen in just 2 cycles. My pp only went down from 43 to 36 after my first 2 cycles of CTDa, but it was nominally 22 after 4 cycles, but within the space of a month four successive figures were 23, 28, 22, 25 (including the 22 after 4 cycles). The 28 was done in a different lab. More on this later.

I wasn’t told I’d had cytogenetic tests. I eventually found out after asking if I could receive a copy of the letter sent to my GP after an end-of-cycle review. I was usually cc’d in after that but I had to re-ask occasionally. The letters always started with a brief summary to date, including a one line summary of my FISH results. After learning this I asked for a full copy of the results. I suspect that if you have a BMB to confirm diagnosis then a sample from the biopsy is normally sent for a FISH test. Note that your myeloma cells can gradually develop genetic abnormalities (or more abnormalities) after diagnosis, it isn’t necessarily a static situation.

Peter, I wouldn’t worry too much about the pp figures going up and down by small amounts, I don’t think electrophoresis figures are particularly precise. Labs Tests Online say “Protein and immunofixation electrophoresis tests give your doctor a rough estimate of how much of each protein is present. ” The trend over time is more significant than an apparent change between one result and the next, which could be within the margin of error. Andrea, I’m surprised you get your results to one decimal place, but having said that they do seem to have a fairly steady downward trend, albeit over just 3 results so far (12.9 > 12.1 > 10.6).

I know from personal experience that there can be a significant and apparently consistent difference between the pp results from two different labs. I don’t know how much better the repeatability is within a given lab. I put my results into a spreadsheet and graph them against time. The line graph (where the plots are connected by straight lines) isn’t very smooth and occasionally a result can be well off the general trend. It’s a pity the spreadsheet doesn’t do a best fit curve. Using a flexicurve would probably produce a better indication of what’s happening.

I’d be surprised if they put you on Revlimid Peter, I should think they will want to keep that powder dry for when you eventually relapse after SCT. But I could be wrong.

Peter, yes it’s definitely Revlimid I’m on, plus Dex. I’m into week 3 of cycle 1. I had an itchy scalp for several days soon after starting but it’s gone away completely. Lots of people seem to get this to varying degrees. The main effect so far has been some of the symptoms of acid reflux that I got when I started CTD. That was cleared during CTD by increasing the Omeprazole I was already on to a daily dose, and I have been taking it daily till the Revlimid treatment started. I’m now on daily Lansoprazole, which is supposedly a bit more effective than Omeprazole. I’m also on daily aspirin whereas I was injecting Clexane daily during CTD. I suspect the aspirin may be the culprit (I’ve got a hiatus hernia). Googling aspirin and acid reflux produces lots of results. I will raise the issue at the next clinic.

Do ask lots of questions on Saturday if you can. It should be interesting.

We watched The C Word on Sunday evening. As it finished my wife turned to me and said should we have watched that?

Best wishes to you all

Ian

[angeParticipant]

Hi Peter, Ian, Dawn and all

Glad you are coping well and that you are getting a good response Dawn. Keep at it and look after yourself and take it easy. Hopefully we will get some nice summer weather which helps!

I don’t think everyone has a cytogenetic test but I had asked because I was interested! As for decimal places I have always been given my pp with decimal places. Its probably not that important though! My next appointment is my 3 month check up at UHW Cardiff with the transplant team next Tuesday so my bloods tests will be with a different lab. I am still doing well apart from expected fatigue but also have carpel tunnel syndrome in both hands which is extremely painful at night. I have had pins and needles in my hands for some time but now the pain stops me sleeping. I saw my GP who said it may get better in time and gave me Ibuprofen gel and Co-codamol. Also I still feel very achy in general but guess this is probably normal. I plan to go back to work in October so have had talks with my line manager and HR who are very supportive, next I have an appointment with Occupational Health.

Hope the information day was informative Peter, also hope you get to SCT soon without the need for Revlimid. I agree with Ian that they may want to keep that ready for remission as they did with Velcade for me.

Ian, hope all goes well for you on Revlimid and Dex. Hope the acid reflux is under control now too, its not very pleasant. Do you know how many cycles you might have?

Best wishes to all

Andrea

[pc452Participant]

Hi Andrea, Ian, Dawn and all,

Apologies for not posting for a while; been trying to get out for walks etc. and the garden is demanding attention now, too. Life seems to be busier than ever or maybe my brain has slowed down, so I’m simply getting less done in a day!!

The Newcastle Information Day organised by MUK (in Gateshead!) was excellent, really well-organised and informative, although having done a quite a bit of research and exchanged info. with you guys, some of the material was already familiar. That didn’t detract from the day in any way though. One very real benefit of the day was speaking to other patients and their partners/carers. And the food at the Marriott Hotel in Gateshead was really very good indeed. I ate far too much; I don’t often have a starter and pudding at lunchtime!

Prof Jackson’s presentation on future treatment strategies was particularly interesting – especially the research into the creation of “monoclonal antibodies” that mimic the antibodies that the immune system creates. These antibodies are designed to attach to certain proteins on the surface of the cancer cells (and only the cancer cells), so that the cancer cells are “flagged” for destruction by the bodies own immune system. A much more friendly treatment.

There were lots of questions asked in the afternoon breakout sessions; it’s a pity these weren’t captured and put onto the MUK site, although some people asked some very specific questions about their own situation rather than general questions, so that may have not been possible if there was a danger of people being identified.

Anyway, I’m a bit closer to next steps in my treatment. My paraprotein and serum free light chain results continued to wobble about but, as my consultant could detect no evidence of the myeloma progressing, he discussed my case with the MDT at Newcastle on Friday and they agreed to go ahead with SCT. I had a call from the senior Sister (CNS) at my local unit on Friday evening with the news, and she said someone would be writing to me this week. I hope that will be with an outpatient appointment rather than a “pack your bag and come in tomorrow” appointment. I don’t feel at all prepared, particularly for the day to day practical issues. But at least we now know where we are going if not exactly when. Can’t say I’m looking forward to my “city break” though. Still, as you both pointed out, Ian and Andrea, it is do-able. So I’ll hang on to that thought!

Incidentally, have any of you experienced “withdrawal” symptoms after completing a course of treatment? After finishing the six cycles of VCD, I’ve had aching muscles and joints and stiff fingers! Nothing that I felt needed treatment beyond a couple of paracetamols now and then at bedtime,  but I expected to have a bit of a “holiday” from side effects when off the chemo! Ah, well!

Hope you are all feeling well and treatments are going to plan without any complications.

Take care everyone.

Best wishes.

Peter

 

 

[cartdawParticipant]

Hya Andrea Ian and Peter  Iv just completed my 4th cycle of the CDT . My para proteins are down to 4 . Have had an appt at sheffield hallamhire to discuss stem cell transplant. The harvest is pencilled in for around early August and the transplant around early sept. All being well. Not looking forward to it as you can imagine but now on this roller coaster of treatment.  If it puts me in remission for a few years I will try anything.  Hope you are all doing ok.

[cartdawParticipant]

The info days sound informative peter I really must get myself booked onto one of these.  Dawn

[Author]

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