• August 2, 2017 /  Myeloma

    Well it’s been a real struggle. Apart from the transplants this may have been one of the toughest regimes I’ve been on. But it is working and so it gives me the oomph to get through it.

    My results have been as follows. I started on about kappa 2,500. After round one the levels went down to 147!! However I had a blip on my ECG and cycle two was just Velcade and Dex, while I had lots of ECGs, an Echocardiogram and a 24 heart tracker. The problem didn’t reoccur, but they did discover that I had mild aortic insufficiency, which means a faulty valve. I’m hoping to see a cardiologist about that. It may not be a result of the myeloma, as it can be caused by a whole variety of things.

    However the second reading still showed a reduction to 103, either due to the Velcade or maybe the Pano was still working. Before I started round 2 my consultant reduced my Pano by 5mg and halved my Dex to 40 (10 x 4) a week.

    After this my levels went down to 70 and then after cycle 4 to 37. Normal levels are 0 to 19 so we are doing well. My kappa/lambda ratios are also going down, but they have almost never been normal, so I’m not expecting them to normalise yet.

    The side effects have been severe. The worst has been the effect on walking. I can’t even walk round the little lake at the bottom of our hill now, my legs are shaky and my feet and legs are puffy. We have used a wheelchair a couple of times on outings. We’re not sure exactly which drug is causing it, as Dex does weaken the muscles, but I have never experienced it that badly. It is likely that the Velcade is mostly to blame, so that dose has been reduced for round 5.

    The other issues are fatigue, digestive issues, especially very bad indigestion, enormous bloating and loose bowels, which I have been controlling relatively well with medication. I retain a lot of fluid and my weight has really gone up, although Dex also wants me to eat more. Sometimes I feel like a Michelin man with bright pink cheeks from the Dex.

    I don’t really feel much better on weeks off, as I get the usual Dex withdrawal, but we are going to try to do more, as this is also very tough for my husband Bob, as life with an chronic invalid is very boring and it’s good for me to make an effort. I have been trying to see friends and have the odd lunch out.

    I know others on Pano have also struggled, so good luck with it all and please do get in touch if you want to share experiences.



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  • May 8, 2017 /  Myeloma

    Well, I’ve had to move on. Pom didn’t work very well. My levels went up high – mid – 2000s and even though they then stabilised, there wasn’t any sign they’d come down. I was very fatigued, but otherwise coped OK. Easter was a bit manic – my consultant was away and while we knew that I’d be going on PVD, I was put on a lot of steroids just to try and hold me steady. Coming down was a nightmare, but I did get some smaller doses to wean me off.

    So I’ve been on PVD for a week. It’s quite complicated. I have a chart to help. The regime runs in 3 week cycles. The Panobinostat (also called Farydak) is on 6 days of the first 2 weeks, so has gaps between. I have to go into the hospital for subcut Velcade injections twice a week (Tues and Friday), which is a nuisance. Then I also have quite a lot of Dex (steroid) on several days. Then at the end of two weeks I get what amounts to 10 days off. I am not looking forward to the Dex withdrawal during that period.

    I didn’t have any major issues until yesterday, when I was on the loo a lot and felt very tired. I slept quite a bit of the day. Then we went for a walk round the lake and on the way back I felt very faint and weak, though I recovered quickly once I sat down and had a drink. Pano is known for the runs and also the general regime can make you faint and dizzy and bring the blood pressure down. Mine is low anyway. So I guess I will need to take it easy. I am ofc taking Questran for my bile acid malabsorption which causes diarrhoea, so I have upped that a bit and yesterday I took Loperimide too (Imodium), so I’m hoping to keep the runs at bay. I will take advice on it. Today things aren’t so bad, but I’ll be back on Pano tomorrow so might expect them again on Wed. I’m also feeling more nausea than usual – I’m not a ‘sicky’ person but I think I may have to use my anti-sickness drugs a bit more. It is likely though that I will get accustomed to the regime and have fewer side effects.

    There is a practical issue to the new regime. I already self-inject my immunoglobulins 3 times a week and some Eprex, which boosts my red blood cells, once a week. This means that I have to find space for 2 Velcade injections. I have begun putting the Eprex into my thigh – which is painful! The Velcade is leaving quite large red blotches, but they are fading over a few days. I am not leaving big marks from my Igs, but do have a couple of big bruises from doing some things too close together. So I’m having to try and be very careful about where everything goes. I have not been taught how to self-inject the Igs into the thigh, and I’m not sure they would be keen on me doing that as you have to get a whole syringe full into the soft part over 10 mins, and the thigh might not work as well as the stomach.

    Generally I’ve felt a bit low so far on this – it’s quite hard work, and I would really like to feel well enough to go out and about a bit. I have done so many medications now I think it’s taken a bit of a toll on my constitution. Keeping hopeful that I will adapt quite soon and also that the regime works as well as it does for other people.

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  • February 22, 2014 /  Myeloma

    Sorry about the gap  in entries. This is partly because we’re waiting to see what is happening re my  transplant. I was told I had three potential donors and then that there was one good 9 out of 10 match, but we don’t yet know if she is now at the stage of going ahead.

    In the meantime my kappa levels rose a little to 400 and then back down to 300 so I have obviously reached a plateau a little above where we wanted me to be. After discussion with my consultant and the transplant consultant they decided to try me on a regime called PAD. This is the Velcade regime as before (4 injections over 2 weeks with a week rest) together with a nightmare 160 mg of steroids, taken at 40 mg a day, days 1 to 4 each of the three weeks and 4 daily IV doses of an older chemo drug called Adriamycin on days one to 4 of the first week of the cycle. I think cycle two I just get the high dose steroids in the first week but then even so I will need to withdraw slowly. The details need checking as there was some confusion about it to start with.

    I had forgotten how nasty chemo is with the terrible tiredness, queasiness and sore mouth. I may lose my hair but that is not something I mind too much about – it will be lost anyway during the transplant. I found week one the tiredness more or less countered the steroids – I am not used to wanting naps all the time!

    The worst thing is the steroids – the lack of sleep, bloating, digestion issues, huge puffiness from face to feet with a red moon face, the leg weakness and the general mood changes and irritability. I didn’t seem to get withdrawal much except terrible tiredness. Obviously hanging in my system.

    At least my platelets have held up so far and although my peripheral neuropathy is definitely around, it is not too bad.

    This week the sleeplessness has been worse and now I am very tired and also feel completely woolly headed. However, we decided to get the decorating and kitchen DIY work done before the transplant as it can’t be done afterwards (spores in plaster are very dangerous for example) so we have been running around sorting that and trying to move all the stuff from the rooms. So no rest for the wicked. The clearing has been quite therapeutic actually provided I have done it slowly.

    On other news – I had my tooth extracted ok but the hole left is not nice and I keep biting my tongue which has added to the sore mouth problems. No sign of jaw disease though.

    I am having a gastroscopy next week to check out the guts prior to the transplant – especially to see if I have the h.pylori bug. Hope not as I don’t fancy the antibiotics that kill it. I hate these procedures but will have it under sedation as before. I made a decision to come off Omeprazole for my stomach acid as it can make you more prone to hospital infections like c.diff which I had before. I went cold turkey on it but have had to go onto Ranitidine now as the steroids give me terrible acid too.

    I haven’t had any new levels yet and have my rest week with steroids coming up, so nothing much else to report. I will put up an entry when I know more about the transplant.

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  • December 28, 2013 /  Myeloma

    Sorry it’s been a while – things have been pretty hectic. We had a lovely Xmas and also celebrated my 60th at the end of November with an afternoon party/drop in which was lovely. My next target is 65!!

    Progress on Velcade has been mixed. My levels were coming down nicely and had reached something like 220s on my light chains from over 1000. But round four results showed a slightly higher result. There is often a plateau reached and I am on a lower dose than ideal because of the peripheral neuropathy. I am in my 6th round atm and will get my fifth round results in about 10 days so we shall see.

    We are comtemplating a mini allo (donor) transplant. This means that not all my immune system is completely blitzed as in a full transplant. The nearest centre is Leicester, about an hour away. They have an excellent reputation, but the logistics would be harder than using our local hospital and ALL treatment for at least a year would be in Leicester as they don’t trust a normal hospital to pick up eg graft problems straight away or to treat the inevitable infections properly. This gives them a good risk of death rate for the procedure of around 10% which can be much higher elsewhere and is not too much higher than the risks with auto transplants (own cells).

    We spoke to the lovely but very forthright main consultant at length and she made all the issues plain, especially the graft versus host issues that can be very severe and turn into chronic issues etc. But she is obliged to paint worst case scenarios. The thought is pretty daunting, but I am young enough to do this and I am quite resistant to the drug regimes, so now is the time. I could hold on and try the new drugs but this may give me some remission at a time when I am strong enough to do it.

    We have made no decision yet – I have had blood tests sent off and I think they have started the process of looking for a donor as my brothers are not matches. We are meeting again in early Jan to see where we are. If I decide to go ahead the actual transplant will not take place until at least April.

    So looking at my current treatment I really need to get my levels down further. I had an entertaining bone marrow biopsy just before Xmas so we could assess whether I needed more rounds of Velcade. As last time, it was impossible to get fluid out. The nursing assistant was on her first day on haem and had to go out as she felt faint, so I just braced against the wall instead of her. We tried two entry points and eventually got a nice core, but I managed to bend the needle!! I am quite lucky as although it is a bit painful I don’t find it too bad and don’t need gas and air which they now offer – makes me very queasy anyway. But my hip was pretty tender for a day or so.

    I am also getting my tooth extracted soon despite the ONJ (jaw disease) risks, but it’s being done at the hospital with antibiotics before and after. I have been off Zometa (bone hardening meds which can contribute to ONJ) for 6 months so am crossing my fingers I will be OK.

    So all go. It is a bit unsettling and Bob and I are having to think of the practicalities as he works full time and will have to take leave somehow if I go ahead, which has financial implications etc. He will be ferrying me too and fro for a year, although I could use one of the voluntary services to supplement that.

    The consultant said it will be the hardest work we have ever done. But I think we can go for it. I will update on the situation after we have next spoken to her and maybe will go through some of the ins and outs for the benefit of other myeloma patients. We recorded what she said last time, so I can list some of the issues.

    In the meantime, here’s hoping all readers whether myeloma patients, carers or friends, have had a lovely Xmas and that 2014 is a a positive year for you all.





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  • November 6, 2013 /  Myeloma

    Just a quick update to say that my second cycle of Velcade has seen another drop in my myeloma levels. For those who understand these things – before I started my kappa levels were well above 1000, then dropped to 688 and are now down to the 300s. Also my platelet levels have gone right up, which is also good news – more room for platelets and less for the myeloma possibly.

    We have decided to go ahead with the tooth extraction as by the time it goes ahead, given very long waiting times at maxillofacial, the problems caused by my Zometa (ONJ) may have reduced. There is a useful article which seems to give some room for hope: http://www.lexi.com/individuals/dentistry/newsletters.jsp?id=april_10

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  • October 28, 2013 /  Myeloma

    Just a short update as I realise it’s ages since my last blog. I don’t have very recent news, but at my last consultant’s appointment a couple of weeks ago, she gave me some figures showing the first cycle of Velcade has brought down my myeloma levels a fair bit, so good news there. Everything is always behind hand, as I don’t get the next blood test results until the next appointment, so I can’t say how round two has gone yet. Two weeks into round three atm.

    I am finding the treatment regime quite hard work but doable. Since the first round I have been lucky and not had to have more blood. I think my blood pressure is pretty low sometimes, but I have been OK. The injections in my stomach haven’t left the very bad blotches some people have – I am rubbing my stomach with evening primrose oil as suggested. Atm I have some bruising, but it’s not too bad. I don’t get any bad nausea and only the occasional bit of a headache.My main issue is the fact that my peripheral neuropathy (nerve damage) does seem to be worse and has advanced a bit more up my legs and is also now in my fingers and possibly arms. In fact I seem to get the odd face tingle too. So I am having a nerve induction test on Thursday to see how bad it is. It is quite difficult to be objective about it, as the feeling does change from day to day and when I am puffed up from water retention the PN seems worse.

    The steroids are a real pain. Sleeping is very difficult for the two weeks I am on 80mg a week, and I am lucky to get a few hours a night. I also find it’s tricky to nap however tired I feel. I have been trying to do some useful things at night. I have found myself overdoing it some days and wanting to buzz about. My muscles are completely weak and I’m not yet in a good exercise routine. Must do it!!

    Then withdrawal in the final week is horrible – very tired, shaky, irritable etc. My stomach and guts are permanently inflated for much of the cycle and my consultant doesn’t really want me to take probiotics, which aren’t recommended for people with low immune systems. I’m trying hard not to give into the terrible munchies I get all the time, which makes the problem worse. I am very puffed up and have a mild diuretic, which is so irritating, what with all the peeing!!

    I am going to the hospital maxillofacial unit today as I have a tooth problem and the meds I was on (Zometa) to strengthen my bones, can lead to a nasty bone problem called osteonecrosis of the jaw (ONJ) if a tooth is extracted. I will do more on this once I have had some info as it should be of interest to myeloma patients.

    However, when all is said and done, I am managing to toodle along, with some adjustments to lifestyle. I have withdrawn a bit to a quieter time at home and I guess this will be the pattern for a while. I am trying to do a few things to keep me sane. I keep up the union and political blog writing and editing. I have enjoyed seeing recent visitors who blow in fresh air with them! I am at the theatre this evening to see a Jane Austen production with my daughter and daughter-in-law and we have a couple of comedians to see coming up. We saw the local Diwali procession in town on Saturday which I enjoyed. Also I am baking! It may not be swimming with dolphins or sky diving but it suits me just fine and I am grateful for what I have.

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  • September 16, 2013 /  Myeloma

    Well it’s been a bit of an up and down time since I last wrote, but then that’s the nature of the beast!

    I began Velcade injections 2 weeks ago. I have them on Tuesdays and Fridays. It requires a blood test first to make sure I can go ahead, and none of my appointments have been quick yet, so hospital parking expenses are well up! Sometimes my hospital makes it up in batches for everyone that day because it is so expensive, so we have to wait for everyone to be cleared to have it!!

    I had my first injection OK on Tuesday, but on Friday, when there’s no clinic and they have meetings etc, I discovered my blood levels were really low. There was a lot of waiting because there was no-one around. Luckily my daughter came over to keep me company! Then a young registrar spoke to me and suddenly said that my myeloma levels were very high and cells were leaking into my blood. If the percentage of these gets too high, the disease can enter a new dangerous and aggressive phase and I would need more treatment. Well that was all a bit of a shock, but I did not panic as I thought I needed more on this and was told that I would have a couple of units of blood on Monday and my consultant would speak to me.

    So on Monday my consultant came and saw me and said she did not think the leakage had reached this point and although my levels had suddenly risen, we should proceed with the Velcade initially. No point in just chucking in anything else until we see how things go. I think the problem was that my levels took a sudden hike over the month she was on holiday – but then how were we to know? I have faith in her and we’ll proceed as she thinks best.

    I can’t pretend that it hasn’t made me a bit anxious and I have had to undergo a bit of psychological readjustment as one does with these things. I need to accept things could go either way atm in terms of disease progression. But I have discussed everything with the family and also with my clinical psych who is brilliant and now I feel OK. One key thing for me was the worry about how my family might cope with my death, but now I believe they will be OK and will support each other. This is a major step forward for me in terms of accepting what might happen and relieving me of anxiety. I am very lucky with my family and support.

    On the actual treatment, for the benefit of other patients: it is going to be hard work. I’m on 80mg of steroids a week, taken in 20s on days 1,2, 4 and 5. I get 10 days off now after 2 weeks of injections and am already starting to feel the withdrawal. I haven’t slept more than 5 to 6 hours a night for a fortnight, sometimes less. My cheeks are frequently pink! My blood pressure is very low and I am very woolly-headeded and sometimes dizzy, as well as quite irritable sometimes (sorry Bob!!). I get terrrible wind and bloating, and some constipation, though had one bout of the runs. Bad acid some evenings. Sore mouth and throat on and off, so gargling/rinsing is important. I think my peripheral neuropathy is worsening with the Velcade, which could be a problem, if my dose has to reduce. Definitely more tingling in the legs and now getting some in the hands for the first time. Bruising too as platelets get very low.

    Having said all that, I am coping OK atm – and of course sometimes you learn to tolerate the drugs better – that certainly happened with Revlimid for me. It is only side effects after all, and you have to learn to go with the flow. I do a lot on steroid days and less when I’m tired.

    It can only be a waiting game now, until we see the first results. Velcade can take a little time for some people. I’ll let you know!


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  • August 21, 2013 /  Myeloma

    So, time to start treatment again. I saw my consultant a couple of weeks ago and my light chains have taken a jump up and the bone marrow results back this decision up – I wonder whether it coincides with my colonoscopy? I feel that any medical incident or illness seems to affect my levels, but who knows? I have done very well in remaining off treatment for a year. My Velcade regime will probably start in the first week of September. I have had a run through of the general points with a nurse and my consultant will ‘consent’ me next week.

    I will be visiting the hospital twice a week – probably Tuesdays and Fridays. The procedure will mean the usual pre-treatment blood test, a wait for results and then what should be a very quick subcutaneous injection, probably into the stomach. It can cause a red, sore disc, but you can use evening primrose oil and there are suggestions on the website I read that ice packs afterwards may help – I need to go back and check that one out.

    I will get two weeks of treatment and then ten days off (so three week cycles). I am not sure how long I’ll get treated for, but it could be 6 or 8 cycles depending on my response.

    I’ll have various other medications, the main one being the dreaded steroids – I think it is 20mg at each treatment and in the week off. So back to the mood ups and downs, wind, indigestion, puffy and sometimes red face and sleepless nights. You also get Aciclovir against shingles and Allpurinol against gout – can’t remember if there were any others, but will let you know when I start. I guess I will still have the Adcal (Vit D and calcium) and the Gabapentin for my peripheral neuropathy.

    It’s the peripheral neuropathy I worry about, as it’s a key side effect of Velcade and I already have it in my feet and lower legs following the Thalidomide treatment before my stem cell transplant. Having it subcutaneously lessens the probabilities but I could still get it and that might mean a lowered Velcade dose. However, we can only wait and see.

    Otherwise it’s the same old side effects as most of these drugs – I am usually fairly tolerant so hoping for the best. I’ll be recording the treatment mainly for the benefit of fellow sufferers.

    In the meantime, things are toodling along, but I am getting very tired now, probably as a result of the myeloma returning. Had a few days away visiting relatives and Rosemoor RHS gardens in Devon, which was great but has really hit my digestion, what with different foods and changes of water, so I’ve had quite severe diarrhoea for three days now, which I’m trying to control with Loperimide and rehydration sachets. Very annoying as I am hungry!

    My tooth problem is yet to be resolved and I’ve heard nothing from either the dentist or the hospital. I’m keeping it under control with mouth rinses etc. I get the odd bout of bad pain, but seem to be able to knock it on the head with paracetamol and clove oil on the tooth.

    We’re going to have a couple of nights in Rochester soon, which I’m looking forward too – have wanted to visit Chatham Docks for ages. We’ll also try to visit RHS Hyde Hall gardens on the way there or back. Here’s hoping the tummy holds out!!


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  • February 9, 2013 /  Myeloma

    Many apologies for not updating recently. There are good reasons for it. We became aware that my light chain levels had started to rise last year – in fact before my last blog. Apart from Bob I didn’t want to tell anyone as it could have been temporary and the kids were going through all sorts of changes like job changes, moves etc. As time went on the levels kept rising and it was obvious that Revlimid was no longer effective. We had lowered my steroid dose and tried putting it up again, but to no avail. So in (I think) August I came off Revlimid. It’s a bit difficult to know exactly why this relapse has happened, but I do have some suspicions that my bad chest infection last year plus the c.diff might have been a tipping point as the levels began rising shortly after. However, who knows – it might have happened anyway.

    Anyway, I had to slowly reduce the steroid dose and am now off it. I had no idea how much that would affect me and the withdrawal symptoms are still with me. I have been told it can take months for your body to relearn to produce its own natural steroids. I also came off warfarin after a 6 week gap and last appointment have also ditched the aciclovir (prevents shingles) and fluconozole (prevents thrush). I am still taking me Adcal (Vit D and Calcium), and Gabapentin (helps with the peripheral neuropathy, though since coming off steroids it’s a bit worse). I’ve also swopped Ranitidine for Omeprazole, depsite my worries about it making me more vulnerable to C.diff, as I have terrible acid atm, despite being on fewer drugs.

    At the moment I am having a break between treatments. My light chains continued to rise through to December though not too fast.  But Jan’s went back to September’s level. We were all a bit puzzled by that. But it is a mysterious disease!

    My next treatment will be Velcade. I had put off telling the kids until I started on it, but as everything has dragged on I have told them now, and so can put it on my blog. I should have had Velcade before Revlimid – that’s how the funding stream usually works. But as it can cause peripheral neuropathy or make it worse I went on Revlimid instead. However, it has been discovered that having it delivered subcutaneously instead of intravenously reduces the possibility of PN, so I can try it now. Velcade is a nuisance in that you have to go to the hospital once or twice a week for two weeks and then have 10 days off. Revlimid was pills and a once a month appointment. But tbh there is no alternative. It doesn’t work for everyone, but I think you get an initial 4 rounds before there’s a decision about whether to continue.

    If it doesn’t work then it is possible to try combinations of drugs, or I could be referred to the Royal Marsden which is a key myeloma treatment centre and where they do clinical trials. A key drug just passed by the FDA in the USA may be licensed over here in the next year or so as well and other drugs are coming on line too, so hopefully I can keep going on treatments for a while yet. Whether they would give me another stem cell transplant I don’t know, but I have one lot of stem cells left to use as well.

    I probably won’t write again until I start Velcade as there won’t be much to report. Hope you all have a good year!

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