Hi All,
That’s really fantastic news, Dawn, that your SCT has produced such an excellent result, even though you had to go through a lot of unpleasantness to get there. Really delighted that you’ve now got over the nasty effects of the high dose chemo. Like Ian, I’ve wondered if you get a better result from the SCT if you have a bad time; but everyone assures me that’s not the case! Anyway, long may your remission continue.
Really delighted to hear that you are doing well, Andrea, and are more settled after your decision to retire. Best wishes and good luck in finding your new “normal”!! This Myeloma thing does rather change one’s perspective on life.
Good to hear, too, Ian, that the Revlimid and Dex (there’s always Dex!) are keeping your PPs stable. Hope the treatment isn’t causing you too many problems and you are feeling well.
I’m pleased to report that I’m still managing “off-treatment”. Post transplant my ppq was 13. It’s since been down to 10 and up to 14 and, as at last month’s blood test, was back at 13 again. SFLC was 146, post SCT, dropped to 134 but has crept up to 194. But my blood counts are good, my kidneys are functioning well and I’m feeling fine, so I’m just being monitored monthly for the time being. Fingers are well crossed though! I am still having the zometa infusions monthly, and swallowing Aciclovir and calcium/vit D tablets several times a day.
I was advised to add the pneumococcal jab to the flu jab this year, too. Again, no side effects! I’m beginning to suspect that my body just shrugs when it gets another load of foreign molecules to deal with!!
Hope you all had a jolly festive season. My CSN said “Well, of course!” I could go visit the grandchildren, so we did, and had a great time. And didn’t come back with a cold, thank goodness, just Christmas presents and a lot of photos of the kids!
Well, keep on keeping on, everyone. The days are getting longer, so Spring must be on the way; although, it seems as if Winter has decided to get in the way just now. We had snow this morning! Which reminds me, I do hope none of you have had any problems with the recent weather. We’ve been ok here but everything is extremely soggy in the garden and the fields around us; and most days it just doesn’t seem to get light. More finger crossing is in order, I feel!
Take care.
Best wishes,
Peter
Hi folks,
I’ve been hanging back from posting until I’d got my first blood test results since being discharged from the Freeman after my SCT. Well, I’ve now got them and, while my blood counts are fine, my PPQ has gone up to 13g/l (it had been hovering around 9 before I went in). Not what we’d been hoping but, I guess we’ll have to wait for another test or two before we know whether my MM is stable at this or is progressing. Maybe my PPQ will go gradually down as yours has done after your SCT, Andrea! I hope yours has continued to fall. How often is yours checked?
My consultant is going to present my case to the MDT meeting again to see what next steps they would recommend. I’m guessing I could be joining you on Revlamid soon, Ian! Ah, well; it’s been nice not being on treatment for a while!
The actual stem cell transplant seems to have worked to “rescue” my bone marrow, though. My blood counts on 17th August were: Hb 138, WCC 3.9, Neuts 2.7 and Platelets 161. Because of this, they are saying no need to rush to start treatment again. They’ll probably let me have my holiday in September first; which is nice!
I did come home with some growth factor injections (filgrastim) to boost my white cell count. Using three of these sent my white cell counts through the roof: WCC 17.34 and Neuts 15.35! So we stopped those, and the counts had come down to 3.10 and 2.17 resp. a week later.
I think you’ll have had your stem cells harvested yesterday, Dawn. Hope it went well. It’s a bit tricky being hooked up to the machine for hours and not being able to move your arms. Did they warn you not to drink much to avoid the need to visit the loo?? My stem cell collection was done in December 2014, and they gave me them back in June 2015, so there’s no problem with keeping them frozen for a considerable time between harvest and infusion.
It’s great to hear from you all. No doubt we’ll post more often when we get back into the short days. I, for one, seem to spend less time at the computer when the evenings are light.
Hope you are all feeling well (considering our situation!). Keep on keeping on!!
Best wishes,
Peter
Hi Mervyn,
I came home from my SCT just a week ago and, apart from feeling rather queasy during the night after the Melphalan, I had no significant side effects at all! I guess I was really lucky. One of the consultants said some people just sail through the whole thing so I do hope you’ll be one of them. But if not, you’ll be very well taken care of. It is important to tell the staff if you are experiencing any problems, day or night. You’ll be provided with an alarm call buzzer. Do use it. They really don’t mind.
My age is seventy, by the way, but I’m a fairly active person, and that may have helped, I’m told.
I would certainly endorse David’s comment about sucking ice before, during and after the Melphalan infusion. My “popcicles” lost their appeal after the sixth though, so I then turned to plain ice cubes. A patient I met at the MUK Information Day in June warned me this might happen, so I made sure I took some ice cubes with me too. Do try to make sure they are quite small though. When mine were served up, I discovered they were the size of plums (bought in Sainsbury’s) – quite a mouthful! They did seem to work though; my mouth has never bothered me at all.
They started me in a single cubicle, which was good at night, but rather lonely during the day. A few days after I had my stem cells infused I was transferred into a four bedded bay, which was much more sociable. It was possibly just as well I was on my own for a while as, I’m told, I reeked of tinned tomatoes for a few days after I had my stem cells back! It’s due to the preservative they put in with the stem cells. Fortunately, I couldn’t smell it myself, and by the time I was moved it had gone!
The care I had was excellent. All the staff, from consultant to hospital porter, were very friendly, extremely patient and very competent. The nurses are in and out all the time and we had a good laugh with them at times. That was a big help in keeping our spirits up as boredom can be an issue. It can be difficult to settle to doing anything at times.
Anyway, the best of luck, and hope it all goes smoothly for you.
Best wishes
Peter
Dear Andrea,
I’m so sorry to hear you’ve been having such a rotten time lately. You must have been thinking you were “out of the woods” so long after the SCT. You were doing so well! Just shows how unpredictable our situation can be, I guess. I hope the antibiotic sorts things out for you quickly and you can get on with recovering fully from your SCT.
Take care.
With best wishes,
Peter
Hi Andrea, Dawn, Ian and Polly,
I’m finding this a difficult post to compose in case it sounds rather “what was all the fuss about”, as I know people often have a really rough time with their SCTs. If it comes across like that I do apologise; it isn’t my intention.
I’m back home again after my SCT and feeling fine. I have to say I think I have been really lucky as I have not had any side effects to speak of at all. So far anyway!
They had me chewing ice before, during and after my Melphalan infusion, which they said is really effective in helping prevent mouth problems. It certainly seemed to work for me. I felt rather queasy during the night after the Melphalan, but that may have been due to the diet of ice. Chewing ice for two hours soon stops being fun!
As always, the main problem in hospital is boredom, and I got very restless if I sat for very long. I didn’t want to lose too much muscle tone if I could help it so I was allowed to walk round the hospital several times a day. The weather was kind and the hospital has very pleasant garden areas, which made my walks more pleasurable. There is also a Maggie’s Centre on site which provided a very welcome change of surroundings. I wonder if any of you have come across one. There are a number around the country, I believe.
I was quite surprised when, on Monday last, one of the doctors came to see me to say that the consultant had been looking for me to say I could go home. Although my blood counts were still quite low, as I was so well, and “sensible”, he considered the risk to be small. Unfortunately, it was quite late in the afternoon and no transport was available, so I got to spend another night in the hospital!
I went back on Thursday for an outpatient appointment when they did another blood test. The white cells and neuts were still low but, as they expected they would be starting to rise again (day 14), they sent me home with some syringes of growth factor to inject myself with which should speed up the process. I’m back under the care of the local team once again, and will have another blood test on Tuesday. Hoping my blood counts are showing a rise by then!
I hope you are all continuing to do well.
Hoping to hear from you; and looking forward to soon having an immune system once again!
Best wishes
Peter
ps haven’t lost my hair yet; but there’s still time!
Hi Andrea, Dawn, Ian and Polly,
Delighted to hear your recovery is going so well, Andrea, and that you are managing well on the CTD, Dawn. Sorry to hear about your carpel tunnel syndrome, though, Andrea. One of our daughters is troubled by that and finds it a real nuisance.
I have, at last, got a date for my SCT – 23rd June. The week before last I went up to the Freeman for “pre-transplant investigations”. All the usual things, including a chest x-ray and ECG, as well as taking enough blood for testing to float an ocean liner. Well, maybe that’s a slight exaggeration, but there must have been about 10 phials!
All seemed ok, apart from my PPs creeping up to 11.9, but last Thursday my GP surgery called to say that the hospital wanted me on antibiotics for a UTI they’d discovered from the urine sample! The only thing worrying me about that is that there won’t be much time to retest before I’m due to go in, so I hope this won’t delay things.
They also told me that I won’t be getting the full dose of Melphalan on account of my seventy years. I seem to remember you had a lower dose, too, Ian. It seems they don’t want to wipe me out with the Myeloma! (Seventy years! How on Earth did that happen?)
All this chat about hair is very interesting. They advised me to get mine cut very short before I go in, so my wife’s hairdresser has, kindly, offered to come to the house to shear me the day before! They do say it can grow back very different, so maybe I’ll be blonde and curly instead of grey and straight!
I’ve to trim my beard very short, too, as that is also going to disappear, I’m told. But, it will come back first, I’m also told. Not that this will be of any interest to you Andrea, Dawn and Polly! Dare I keep a photo record of all these changes, I wonder!
Well, I hope you’ve all been enjoying nice weather in your various parts of the country. For a nice change the weather hasn’t been “grim up North” recently, and we’ve been making the most of the sunshine.
Take care, everyone.
Best wishes
Peter
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
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
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
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
Hi Andrea,
Just spotted your post that your SCT was going to happen, indeed will have happened, in February after all. Hope it’s going well and hasn’t been too bad going through the “rubbish” phase that everyone warns about!
The very best of luck with the outcome. Spring and, with luck, better weather, will greet you when you’re discharged. Enjoy!
Peter
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
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
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
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
