Hi everyone
Dawn, that’s great news, I’m very pleased for you. I wish you a long remission. I sometimes wonder if you have to suffer pain during the SCT to have a good remission, as in your case, whereas if you have a relatively easy SCT it doesn’t work as well. But I could be wrong. I’m just about to start my 10th cycle of Revlimid + Dex, it’s amazing how the time flies by. My pp was rising post SCT but since starting Revlimid it has been fairly stable in the low to mid 30s.
I was in the happy position of being able to retire early, long before mm, so I did. This was partly prompted by seeing a number of work colleagues over the years looking forward to retiring at 65 and then dying either before or not long after retirement. I enjoyed the work I was doing, but I also enjoy the freedom of retirement. It’s been great, and as for not knowing what to do, which some people say, I don’t know how I found the time to go to work.
Andrea, it’s great that your pp is also stable at a nice low figure. 9 is good. Re trying something different, have you got a bucket list?
Peter, I wonder how you’re doing? I went to the Infoday in London which was very interesting and quite upbeat about new developments in treatment. Let’s hope we’re given the opportunity of benefitting from them.
That’s strange, I don’t seem to be able to scroll up into the early part of this post to check it’s ok before submitting it. I use an iPad and I used to be able to. But things change and I haven’t been on for a while.
Happy New Year to you all and to everyone else on the forum. Ian
This Royal Surrey flow chart may help:
http://www.royalsurrey.nhs.uk/Myeloma_algorithm
Note that Pomalidomide will not be funded from 1st November. Lenalidomide (Revlimid) will not be funded for 2nd line treatment, but will continue to be funded for 3rd line treatment. In both cases existing treatment can continue.
You can see the September 2015 (and previous) CDF decision summaries here:
http://www.england.nhs.uk/ourwork/pe/cdf/cdf-drug-sum/
and for patients already being treated, see para 6.11 in the following guidance:
http://www.england.nhs.uk/wp-content/uploads/2013/04/cdf-sop-2015-16.pdf
‘6.11 Where a drug has been removed from the National CDF List as a result of the re-prioritisation process and it has not been commissioned by NHS England as part of a national chemotherapy funding policy or in response to a positive NICE Technology Appraisal, any patients currently receiving the treatment under the CDF will normally have the option to continue treatment until they and their clinician consider it appropriate to stop.’
The Royal Surrey protocol for VTD (Velcade (Bortezomib) + Thalidomide + Dex) says it is the ‘preferred 1st line option for transplant-eligible patients’. See line 6:
http://www.royalsurrey.nhs.uk/VTD
This ties in with the NICE pathway for MM (see Stanley’s link in post 3).
Their protocol for CTD (Cyclophosphamide + Thalidomide + Dex) says it can be used for first or subsequent-line chemo:
http://www.royalsurrey.nhs.uk/CTD(a)
You can explore their full list of guidance and protocols here (scroll down to multiple myeloma):
http://www.royalsurrey.nhs.uk/Haematology-Chemotherapy
Other hospitals may have different protocols. I have no connection with the Royal Surrey, I chose it because it came up in a search and it’s online documents seem to be fairly comprehensive.
Re your 1st post, as far as I can work out Velcade is still approved by NICE for 3 situations: induction treatment for transplant-eligible patients; induction treatment for transplant-ineligible patients who can’t be treated with Thalidomide; and treatment at 1st relapse for patients who have not received Velcade treatment previously.
It is not listed in connection with myeloma in the May 2015 or September 2015 CDF decision summaries I gave a link to above. It is in the December 2014 summaries (Bortezomib in bortezomib-naive patients with relapsed myeloma).
Ian
Hi Dawn, Peter and Andrea
Good luck Dawn, I hope your transplant goes smoothly. I’m sure you’ll cope well. You will have lots of infusions for the first couple of days or so, then for the next few days you’ll probably wonder what all the fuss is about. After that it’s a case of getting through each day, but each day is a day nearer to your discharge. If I had to give just one piece of advice it would be to try to stay active, I’m sure it helps with recovery. Take care.
> Peter. Sorry to read your first pp result is a bit disappointing, but it’s best not to read too much into one result – it might just be a high result within the margin of error – better to wait for a few more to see what the trend is. The main aim is long remission, I don’t know if a deep response is necessary for that. Hopefully you won’t have to join me on Revlimid for a long time, but at least it has survived the recent CDF cull.
My pp seems to have stabilised in the low to mid 30s since starting Revlimid. I’m currently on my 5th cycle.
> Andrea. Barts sent a schedule of immunisations to my GP and a copy to me. It started with Prevenar at 3 months post transplant. I’m one year post transplant and I’ve completed most of the schedule. It’s been driven by me, I’ve made all the appointments.
Some of my immunisations were given after I started Revlimid, which hits your blood counts. I happened to have an appointment with a GP nurse for two inoculations the day after a blood test at Barts. My neutrophils were 0.7 and WBC 2.1. When I went for the inoculations I told the nurse and asked if it was ok to go ahead. She was unsure so I suggested she could phone my CNS at Barts to check. She did and the CNS checked with a doctor who said it was ok. It was all done in a few minutes, which was impressive. So I should think you will be able to start your immunisations as planned. Are you having them done at the hospital or at your GP’s surgery? Whichever it is, your CNS will be able to advise you.
Re your question about Aciclovir and Septrin, I’ve been on Septrin (Co-trimoxazole) continuously since my induction treatment (CTDa) started nearly 2 years ago, with the exception of about 4 weeks during and after the transplant. I’ve been on Aciclovir continuously since my second treatment (Velcade + Dex) started about 18 months ago. Maybe they would have been stopped if I’d had a good remission.
Best wishes to everyone, Ian
Hi All
> Dawn, it’s good to hear your pp has responded well to CTD. I’m not sure about the implications of high FLCs on their own, it’s not something I’ve explored. MM has so many variations. Sorry to hear about your continuing side effects. I recollect having painful thigh muscles for a while but I think it was when I was on Velcade + Dex, not when I was on CTDa. I mentioned it at the next clinic and my consultant suggested tonic water might help with muscle cramps, it contains a small amount of quinine. I tried it and it didn’t seem to have any immediate effect. The muscle pain subsided soon afterwards, but I don’t know if the tonic water had anything to do with it.
I recall some people in the States saying on Myeloma Beacon that they stayed close to their hospital while having their SCT instead of in the hospital. I think they had to wear face masks whenever they went outside. It’ll be interesting if they have this type of arrangement at Sheffield. Or maybe you’re being offered somewhere nearby to stay if your harvesting takes more than one day. Barts have a hostel next to the hospital where you can stay, for example overnight prior to admission.
You saying it’s starting to get a bit scary reminds of Cupcake’s thread ‘Getting to the scary bit now’. As everyone who’s been through a SCT says, it’s doable. And even though it didn’t work for me, if I hadn’t done it I would have always wondered whether I should have. Anyway you should find the harvesting is ok, if a bit tedious. Good luck.
> Dave. DVT? (deep vein thrombosis?) I guess you meant to say VTD (Velcade + Thalidomide + Dex). I must admit I wasn’t familiar with the term VTD, I had to look it up, and I was quite surprised to discover that apparently Velcade + Dex with or without Thalidomide has been the preferred induction therapy since April 2014 for patients who are suitable for a SCT. CTD (Cyclophosphamide + Thalidomide + Dex) was the preferred induction therapy when my treatment started in Nov 2013. Just shows that treatment protocols can change.
You’ve had the best possible response, I envy you! The spirometer and ecg checks are part of the run up to your harvest and transplant. It might be worth asking your consultant if they can go ahead with the harvest, to collect the best possible stem cells, but delay the transplant until after the wedding. On the other hand he/she might simply say that delaying both by two or three months will be ok.
Re your comment about Ibuprofen, Myeloma patients are told to avoid non-steroidal anti-inflammatory drugs (NSAIDs) like Ibuprofen because of the risk of kidney damage.
> Peter, I hope you are making good progress. I think I misread your post and that you were discharged earlier than I thought, on day 12. That’s very early. By my reckoning you passed day 50 just over a week ago so I hope you’re feeling good and enjoying life.
Best wishes to everyone, Ian
Hi Everyone
Peter, it’s good to hear from you and I’m pleased for you that your SCT went so smoothly. You beat me by 3 days, I was discharged on day 17 and I thought I did well.
I was 69 so I received the reduced high dose melphalan like you (i.e. MEL 140 instead of MEL 200). I think side effects like mucositis are less likely, or likely to be less severe, if you’re given MEL 140.
I don’t envy you chewing ice, I wasn’t offered that thankfully.
Yes, I remember the boredom. I wasn’t allowed out of the ward except towards the very end. The air in the ward was filtered and maintained at a slightly higher pressure than outside to prevent airborne infection coming in. There were airlocks at the entrance and between the main ward and the side wards. To pass the time I read the paper and any supplements from cover to cover, watched tv, listened to radio, strode up and down the ward, and surfed the web on a cellular mini iPad (very useful).
My neutrophil count was zero from day 7 to day 11, then 0.2, 0.4, 0.8 and 1.3 on days 12 to 15. I was told I could be released when my neuts were consistently above 0.5 (above it for 3 days running I think) and provided I felt ok.
I had been giving myself daily Zarzio injections since day 5, which boosts the counts artificially, so the doctor decided to skip the injection on day 15 and see what effect it had. My neuts dropped but only to 1.0 on day 16 and the doctor said I could go. So I could have been discharged on day 16 but it was convenient for several reasons to be collected the next day and the doctor was happy with that. I had a final Zarzio injection on day 16 and my neuts shot up to 3.1 on day 17.
My next bloods were done as an outpatient on day 20 and my neuts had dropped to 0.5, which just shows how much the G-CSF injections boost the counts. My neuts rose steadily over the next 3 weeks or so. My platelets were quite low up to day 20 (24 on day 20) then rose rapidly over the next 2 weeks.
If you haven’t lost any hair yet I doubt you will. Telltale signs are hair shedding when you wash it and lots of hair on your pillow.
Life is busy and I haven’t been on here for a while. I’m half way through cycle 3 of Revlimid + Dex. The start of cycle 3 was delayed because the Revlimid had knocked my neutrophils down to 0.7 and the consultant wanted to wait till they recovered to at least 1.0. She also reduced the dose. The cost is amazing, £4368 for 21 capsules according to NICE. (Pomalidomide is even more expensive but it’s no longer available if you aren’t already on it.)
Andrea, I hope your wrists improve soon. I’ve had a painful knee on and off in the last couple of weeks. It’s ok at the moment. I was warned a few clinics ago that when you get myeloma bone pain it’s a deep nagging pain so I don’t think it’s that. Other than that I’ve got some lingering neuropathy from earlier treatments. I’ve been referred to an ENT clinic about my voice/throat. It hasn’t been as bad during this cycle, maybe the reduced Revlimid dose has helped.
In answer to your earlier question I think you stay on Revlimid for as long as it works and you can tolerate any side effects. The manufacturer pays for the treatment if you’ve been on it for 26 cycles – I’m not sure if it’s the total cost or the cost after 26 cycles.
Sorry to hear about your recent infections. Take care.
Dawn, I hope you are still on course for an early August SCT. It’s a bit daunting but you’ll probably find it’s a lot easier than you think it’s going to be, and recovery afterwards can be quite quick, I think I was more or less back to normal fitness in a couple of weeks or so.
Best wishes to everyone.
Ian
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
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
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
Hi Matt
No, sorry, I’m being treated at Barts. I’ve seen the Royal Marsden mentioned quite a bit when I’ve been browsing the forum so I’m sure someone else can help. Sadly there doesn’t seem to be a way of searching the forum (Edit: yes there is, at the top of the forum – click on ‘Discussion Forum’).
Ian
Hi Matt
Does this page answer your question?
It doesn’t indicate how up to date it is.
Ian
Hi Peter
Being a person with myeloma rather than a myeloma patient is a good way of putting it. I think that’s how I tend to feel. Actually, I tend to forget I’ve got myeloma a lot of the time, though not for long periods inevitably if you’re still taking medication for it.
I’m sorry to hear the Velcade treatment is not having a dramatic effect, but don’t assume it’s stalled yet. The rate of fall may not always be smooth, each measurement has a margin of error, so the next reading could show a further drop. You are still well into partial response territory as far as the paraprotein is concerned, down from a peak of 29g/L to around 10. They could switch you to another treatment if Velcade has plateaued, but I suspect they will hold fire with other treatments and the next step will be a SCT.
Good luck
Ian
iang.
Hi Kath
I haven’t got MGUS, but the Myeloma UK infosheet about it, which can be downloaded here
says, in the “How is MGUS managed?” section: “Paraprotein levels can rise and fall in MGUS – this is normal. However, any steady increase in paraprotein level, or development of new symptoms, requires further tests to investigate whether MGUS has progressed to myeloma.”
There will also be a margin of error for each measurement.
So I suspect there is nothing to worry about yet. You need more than two rising measurements before you can describe the trend as a “steady increase”. Your paraprotein level is also well below the 30g/L upper limit that’s used for MGUS diagnosis.
Take care
Ian
Hello Mandy
Thank you for the update. It’s brilliant that you’re in complete remission, you must be delighted. I hope you manage to conquer the occasional down days. I guess we all have moments when we’re a bit apprehensive about what the future might hold.
I’m at day 160. Sadly my paraprotein level was higher after the transplant than it was before, and it’s been steadily drifting higher, which just goes to show transplants don’t always work. I think I’m effectively left with the partial remission I got from the initial treatments and it’s as though the SCT never happened. The high dose Melphalan obviously wiped out my stem cells but left my myeloma cells mostly or completely untouched. Still, looking on the bright side, I’ve been treatment-free (since discharge) for nearly 5 months and counting, and I’m feeling fit and well.
I was in the Wednesday clinic at Barts today, my appointments are four-weekly. Are you still being seen at Barts or are you back at Queens? (Edit: oops – you answered this – you said you’ve just been seen at Barts. I was asked at my second clinic appointment whether I wanted to continue to be seen at Barts, be handed back to my local hospital, or a mixture of the two.)
Best wishes.
Ian
Hi Jenny
You might struggle to find someone else with PCL here, it is much rarer than myeloma, and myeloma is a rare cancer. I think you’re the first person to mention it in these forums. Myeloma UK have published an Infosheet about it:
There are some topics (threads) about PCL in the Myeloma Beacon forums in the US. You can find them by going into the forums here:
http://www.myelomabeacon.com/forum/
and typing ‘plasma cell leukemia’ in the search box near the top of the page. Note that a simple search just looks for the words in topic titles. Doing a search using the usual UK spelling ‘leukaemia’ finds a couple more results.
Alternatively, or in addition, you can do a site search using Google. Type the following into the Google search box:
“plasma cell leukemia” site:www.myelomabeacon.com
Putting a phrase in quotes forces the search to look for the phrase rather than the individual words. The alternate spelling provides a different set of results:
“plasma cell leukaemia” site:www.myelomabeacon.com
Take care, and good luck with your treatment.
Ian
Hi Amanda
I suspect the labs use different units (i.e. Canterbury results in mg/L and Kings results in mg/dL). 180 mg/dL is equivalent to 1800 mg/L.
