[pc452Participant]

Hello everyone,

This is my first post and I’d like to express my appreciation to all those who spend time posting so much positive support on the forums. It is really helpful, although it does highlight what an individual and variable disease Myeloma is.

I’m a 69 year old male, in reasonable nick; I enjoy rock climbing and fell walking – apart from the downhill bits, as my knees are a bit worn out!

I’d been monitored six-monthly for MGUS since 2009, with my paraprotein “essentially stable” at around 24g/l. Then, early this year, my Hb started to fall, around 4 points per month. A bone marrow biopsy confirmed Myeloma, at stage 1, and I started six cycles of CTD on 27th June2014 with my paraprotein at 29g/l.  On 31st October, at the end of the six cycles, the paraprotein had come down to 7g/l, but by 28th November it had gone back up to 10g/l. I had my stem cells collected on 17th and 18th December, the plan being for me to be admitted on 29th December for the high dose chemo and transplant procedure. But, my paraprotein had continued to rise and was up to 13g/l on 17th December, so it was recommended that I have some more chemo before having the transplant.

The MDT meet on 2nd January and will decide what the next steps are to be!

I’m wondering if this is an unusual thing to happen, that the paraprotein gets knocked down but gets back up again straight away. Does anyone know what the “more chemo”  to get the paraprotein level down again might be? It won’t be more CTD, I understand. I guess I’ll find out in a week or so, but forewarned is forearmed and all that!

Can I also send my best wishes to everyone for 2015, hoping we all have a good year!

[angeParticipant]

Hi

Welcome to the forum, you will find lots of support and information here! I am pretty much in the same situation as you. My paraprotein only got down to 11 after 9 cycles of CTD and it then went up to 16. I then had a Cyclo prime before my stem cell collection. I am going to have my transplant after our son’s wedding which is at the beginning of February so I am not sure if I will need any more treatment in the meantime. I would be interested to hear what treatment you are given.

Best wishes

Andrea

[pc452Participant]

Hi Andrea,

Many thanks for your reply. Sorry to hear your PP didn’t stay down too. I didn’t have the Cyclo prime before the stem cell collection, just the G-CSF injections for four days. Did the cyclo lower your PP level again, and has it stayed down? I had another blood test just before Christmas to see whether my PP level had continued to rise, but the result isn’t back yet.

I’ll let you know what my new treatment plan turns out to be. I’m hoping we will actually hear something on Friday.

Best wishes

Peter

[iangParticipant]

Hi Peter

My guess is that “more chemo” will be one of the various Velcade combinations. That’s what I was switched to (in my case Velcade + Dex) when my response to CTDa seemed to have plateaued after 4 cycles. Either CTD or Velcade seems to be the choice for initial (induction) treatment in the UK for anyone not on a trial who might be eligible for a SCT.

My pp was somewhere in the mid-teens to twenty-ish region when I had my SCT (I can’t be more precise because there is a long gap in the pp levels that I’m aware of).

Good luck, and a happy new year.

Ian

[pc452Participant]

Hi Ian,

Thanks for that info. It’s looking like I may not be on the agenda for the MDT meeting this Friday as my PP result doesn’t seem to have come back from the lab yet, so it will probably be another week before I find out for definite what’s in store!

How did you find the Velcade in comparison with the CTD? I’ve not come across “CTDa” before. One of your other posts tells me the “a” stands for “attenuated” but I’m wondering what dosages this indicates. I was on three-week cycles, starting with 500mg of Cyclo on days 1, 8 and 15, 40mg of Dex on days 1 to 4 and 12 to 15 and 100mg of Thalidomide every day. After three cycles the Thalidomide was increased to 200mg daily. I don’t know if that was because they thought the PP should have come down more, or because I was tolerating the drugs fairly well, or both!

Your post describing your SCT is also very helpful. The detail you give answers a lot of questions.

An aquaintance who lives in Yorkshire and has MM has mentioned the special mouthwash in relation to mucositis in the mouth resulting from the Melphalan. My hospital, in the north-east, hasn’t mentioned this; they apparently favour chewing ice to completely chill the skin lining the mouth, which seems to stop the Melphalan from getting anywhere near it and causing a problem! Apparently it works, but you’ve to do it for a half-hour before the Melphalan, while you’re having the Melphalan, and for a half-hour afterwards!

I’ve started using a Sensodyne toothpaste in an attempt to desensitise my teeth against cold. Hope this works!!

Hope you’re doing well after your SCT and all the very best of luck in 2015.

Peter

 

 

[iangParticipant]

Hi Peter

The attenuated version has half the dose of Dex, i.e. 20mg instead of 40mg. I assume I was on it because of my age, I was 68 at the time. Published information about CTDa usually says it’s given to older and/or less fit patients who are not eligible for a transplant, but I went on to have one. It’s mentioned in Myeloma UK’s CTD Infoguide (bottom of page 27) and in their Essential Guide (page 34) and possibly elsewhere in their literature. (For the benefit of anyone who isn’t aware of their publications they can be viewed or downloaded here:
http://www.myeloma.org.uk/information/myeloma-uk-publications-list/ )

I was on the 4-week version of CTDa: 500mg Cyclophosphamide on days 1, 8, 15, 22; 50mg Thalidomide daily for cycle 1, increasing by 50mg per cycle to 200mg daily for cycle 4; and 20mg Dex on days 1-4 and 15-18. The Thalidomide is increased gradually to see how well you tolerate it.

Moving on to my Vel/Dex treatment, I was on 5-week cycles consisting of 4 weeks of treatment followed by a 1 week break: Velcade on days 1, 8, 15, 22; and 20mg Dex on days 1-2, 8-9, 15-16, 22-23. The Velcade dose is calculated using your estimated body surface area.

The main differences were –
CTD meds are all oral so I only needed to visit hospital for bloods and a review towards the end of each cycle and to pick up the meds for the next cycle. I am lucky in that I live within walking distance of a small local hospital, and I was able to go there to have bloods taken in advance of visits to the main regional hospital, which is in the same NHS trust. So I only needed to go to the main hospital once every 4 weeks for the CTDa treatment and once every 4 weeks for a Zometa infusion (sadly the cycles were out of phase).

Velcade is injected subcutaneously and requires a hospital visit. It’s expensive (about £750 per injection) and the dose only keeps for about 8 hours once prepared. The nurses always waited till I arrived before ordering it from the pharmacy, which usually took about an hour. I was on a 5-week cycle consisting of 4 weeks of treatment followed by a 1 week break. Bloods were required before each injection so the nurses could check it was ok to proceed or if a dose adjustment was needed. Again I was able to have the bloods taken the day before at the local hospital.

The CTDa caused mild neuropathy in my hands which slowly subsided after the treatment was stopped. Vel/Dex caused mild neuropathy in my feet, stronger than the Thalidomide neuropathy. It’s subsided a bit but I’ve still got it. After the Velcade was stopped I gradually developed what I think is neuropathy in patches around my knees and later, to a much lesser extent, my elbows. The affected areas have a numb sensation and are also tender depending on how they are touched.

Otherwise I didn’t really notice much difference between the two treatments. I got a couple of days of constipation in each treatment week, which I didn’t do anything about because I figured taking a laxative might cause my bowel to flip to diarrhoea after the constipation. I didn’t have the Dex days that other people refer to.

Barts don’t seem to go in for chewing ice. I’ve seen it mentioned a quite a bit in the Myeloma Beacon forums. Anyway, the Melphalan infusion was uneventful, just another infusion among many, and I didn’t get mucositis, which was unusual but not unknown I was told.  I was given MEL 140 instead of MEL 200 because of my age (69 at the time), which may go some way towards explaining it.

Thanks for your comments about my SCT post. I’m pleased I wrote it when the experience was fresh in my mind. I wonder how Mandy is doing.

I’m doing well thank you. I feel relatively normal.

Hope you hear soon what’s happening next.

Ian

[pc452Participant]

Hi Ian and Andrea,

My case was discussed by the MDT at the Freeman Hospital in Newcastle on Friday. I had a call from the Specialist Nurse (Sister? – I’m a bit unsure about uniforms and statuses!) at lunchtime. She said my PP result had come back from the lab as 11g/l. I thought that was great, it was coming down again (from the 13.1g/l they had measured when I was having the stem-cell collection at the Freeman) but she said that they were regarding the progression as rising from 7 to 10 to 11. I think they were ignoring the 13.1 as it was done at a different lab. Anyway, she said rather mysteriously, there were “other indications”. When I asked what these were she said the “free light chains” were on the increase, and these were a big risk for the kidneys. She didn’t say what the level is, and Iwouldn’t have known at what level they begin to be concerned anyway. Although I think maybe it’s the direction of travel rather than the level itself that is a worry.

So, they have decided to put me on a VCD regime, as you suspected, I think, Ian: a three-week cycle, that will be two weeks on with a week’s break. Don’t know the dosages yet. I have to pitch up at Darlington Memorial tomorrow at 9.00 for bloods, height and weight, etc. (presumably to decide on these).

The plan is to start treatment on Tuesday. Or that may turn out to be “was” rather than “is” as, unfortunately, I started with a head cold on Friday evening. I don’t know whether this will result in the treatment being delayed, as there was no way to contact the Specialist Nurse over the weekend. Why do these things always seem to happen on Friday evenings??!

Apologies for the delay in replying, by the way. We’ve had visitors over the weekend. Hope I haven’t given them all my cold!

Best wishes,

Peter

 

[angeParticipant]

Hi Peter

Good luck with the VCD regime and hopefully your cold won’t delay treatment. I will have another paraprotein level taken soon along with another bone marrow biopsy and hopefully straight through to stem cell transplant in February. I have just had my hair shaved as I lost most of it after the Cyclophosphamide prime, feels a bit strange but I am glad I did it!.

Best wishes

Andrea

[iangParticipant]

Hi Peter and Andrea

> Peter
I said specialist care nurse in another thread. I’ve just checked and I should have said clinical nurse specialist. FLCs weren’t mentioned during my reviews except when I asked and then the response seemed a bit reluctant and brief. They seemed to concentrate on pp as a measure of progress. I’m sure you will have been told to drink plenty of fluids to protect your kidneys.

The initial Velcade dose is 1.3mg/sq m x your body surface area in sq m. Your BSA can be estimated using BSA(sq m) = sqrt( Height(cm) x Weight(kg) / 3600 ).

One effect of Velcade I forgot to mention is injection site reaction. I regularly developed a slightly tender red area round the injection site, I would guess about 1.5 inches across, which gradually faded over the next two weeks or so. Velcade literature recommends injecting in the tummy or thighs and gives advice about needle length and injection angle to minimise the risk of injection site reaction. For example see pages 11 and 12 here:

http://www.velcade.com/Files/PDFs/dosing_and_admin.pdf

I was injected in the back of my upper arm, alternating between my left and right arms for successive injections. This IMF tip card says skin reaction may be more likely there (first para on page 2):

http://myeloma.org/pdfs/TipCards/IMF-TipCard-SQVelcade_2014_b3_web.pdf

Watch out for peripheral neuropathy.

Good luck. Hope it goes well.

Ian

> Andrea
In retrospect I should have had my head shaved. I lost some hair after priming and a lot more after the Melphalan. The wispy remnants probably didn’t look good. I didn’t get them clipped until my hair started regrowing.

Is a second BMB standard where you’re being treated? I’ve only had one – the one I had at diagnosis.

Good luck with your transplant.

Ian

• This reply was modified 9 years, 10 months ago by  iang.

[pc452Participant]

Hi Folks,

The sister queried my having a cold with the consultant this morning, and the decision is to start the treatment as planned tomorrow, and if we need to stop, we’ll stop! Apparently, they need to see an 80% fall in PP level from the original at diagnosis before I go in for the SCT. She said not to worry about the FLCs. They are always there and they’ve been monitored all the time. It was just that, since they didn’t have that latest PP result, the consultant took his cue from the FLC result, which was also going in the wrong direction!

The sister is a CNS in Haematology – which I, too, assume is Clinical Nurse Specialist,  Ian.

Bad luck having hair problems at what seems like quite an early stage, Andrea. Hope you have some nice warm hats! I know the high dose Melphalan is going to do that and I’ve been advised to do what you have done too. But I hope I’ll be able to leave it until nearer my SCT time – it’s too cold just now!

Strangely, my hair started to thin quite a bit a week or two after I’d finished my six cycles of CTD, which surprised me.

I’ve had a look at the two links, Ian. There is a lot of detail there. Very informative and interesting to read through, but I have to admit, I’m pleased I’m not one of the professionals having to remember the stuff! Though I guess they’d know where to find it if they needed to check on anything.

Thanks, both, for your good wishes. I hope things go well for you, too.

Peter

[angeParticipant]

Hi Peter/Ian/all

Just wondering how you are getting on with your new regime? I hope you are feeling better and that the paraproteins are coming down.

I have been told that the original date for my transplant which was mid Feb is now not going to be until mid March because of the waiting list. My paraprotein which only got down to 11 after 9 cycles of CDT has now risen to 15 and so I have been asked to go to clinic on Tuesday to discuss more treatment. I don’t know what other people have had in this situation but the information from Ian on Velcade is interesting. I will have to wait to see what’s in store for me! I will have another BMB within a month before transplant, in answer to Ian’s question I think it is standard.

Best wishes
Andrea

[pc452Participant]

Hi Andrea, Ian, everyone,

Good to hear from you again, Andrea, although I’m sorry to hear your SCT has been delayed. Like me, you’d probably rather have got it done and over with. On the positive side, I guess you can look forward to your son’s wedding without thinking about your SCT happening  just afterwards.

It’s interesting how treatments vary across the country; a second BMB before SCT has not been mentioned to me, either. Although that’s no guarantee they won’t spring one on me if they decide it would be necessary.

I don’t remember much of the BMB that led to my diagnosis. My consultant apparently favours giving a sedative, and not just the local, which was fine. But I was really away with the fairies afterwards. I vaguely recall having to eat a ham sandwich before they would let me leave, and my wife being rather worried that I was not in control of my feet as I left. I also recall directing her driving out of the car park, and then her waking me when we got home! No ill effects afterwards though, just a slight ache for a few days afterwards.

My new treatment seems to be going fine, after a bit of confusion at the start. As I mentioned earlier, I’m on a three-week VCD regime, with two weeks of Velcade injections twice a week followed by a week off. Plus 20mg of Dexamethasone on each day of the velcade and the day after. The Cyclophosphamide is 500mg on one day in each of the three weeks. The confusion at the start was because the pharmacy’s instructions were ambiguous – they said the dex was to be taken on “the day of the chemo” and the day after. The nurse, and I, took “the chemo” to mean the cyclophosphamide. But that would have only have required 60 of the dex tablets for a treatment cycle and I’d been given 80. So I queried it and it was clarified, and the sister was going to “have a word” with the pharmacy to improve their labelling!

Anyway, I seem to be tolerating the treatment quite well and I feel fine. My finger tips sometimes feel a little “dull”, but it’s no problem. I’ve not been sick or even feeling “queasy”. My injections are being given in my abdomen, but I’m still getting the pink patches, Ian. Although they don’t seem to be surrounding the injection site but rather slightly off to one side! I have had a little trouble getting off to sleep a couple of nights, and that is unusual for me, so it could be something to do with the treatment.

Although I have to do “bloods” the day before each injection, I won’t get a PP check done until 26th Jan. and it usually takes a week or so before the result is available, so it’s going to be early Feb before I know if the treatment is working. And they have warned me not to expect too much at first! They did say to expect three or four cycles though so, as we all often find, it’s a case of wait and see!

Good luck with the treatment they decide for you, Andrea, and do let us know how you get on with it.

Best wishes

Peter

 

 

[pc452Participant]

Hello again Andrea, Ian and everyone,

Apologies for not posting for a while, too many distractions and uncertainties. Hope you are both doing ok, and you were able to enjoy your son’s wedding, Andrea, while waiting for your SCT. Have you actually got a firm date for that yet?

Regarding my VCD treatment; the first cycle dropped my PP from 12 to 10 but, disappointingly, the second cycle has left them at 10g/l. I am now in the second week of my third cycle and the consultant has asked for a blood test tomorrow so that they can have a look at PP and serum free light chains to see what’s happening so they can decide what to do next. This morning I had a word with the CNS and she said he’s not in any great hurry to change things, so I’m guessing the decision may well be to press on with a fourth cycle. But I guess it will depend on the results of tomorrow’s test, which we won’t know for another week. You’ve got to learn to be patient, haven’t you, with this thing? Not always easy to do though.

Still feeling quite “normal” and just getting on with life, concentrating on being a person who has Myeloma, rather than a Myeloma patient, if you know what I mean.

Take care, each.

Kindest regards,

Peter

[iangParticipant]

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

• This reply was modified 9 years, 9 months ago by  iang.

[cartdawParticipant]

Hi Ian and Andrea hope you are both doing ok have been watching your posts as I have just started treatment as have gone from asymptomatic myeloma to active myloma my paraprotein in 26 and my free light chains have jumped to 7,000 which is high risk for kidney damage.  everything else is stable.  I have just gone into the myeloma x1 trial and randomised to CDT . have just started my first cycle no side effects yet am wondering if this is the calm before the storm.

[Author]

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