Sarah’s Myeloma Blog

Just to let you know that my bone marrow results were also very  good - they were struggling to find a plasma cell. My consultant is going to discuss my case at one of the meetings she goes to with people from Leicester and Kettering, to see whether we should be considering any other treatment, maintenance therapy or just  go for a ‘wait and see’ policy. There is a new mini type of transplant with a non-related donor being trialled elsewhere at the mo, as a reinforcement type of treatment, but it has various pros and cons - I will wait and see what she says. Difficult to think about more treatment at the mo. You will be pleased to know that she used my case in a recent lecture she gave - fame at last!

I’m trying to be more active, and have started doing regular short  walks and some stretching exercises to strengthen my muscles, which are weedy to say the least. Did prune my buddleia today, but am exhausted now! I am still finding it hard to shake off the tiredness and  the indigestion. I think the latter will improve when I finish some of the tablets - another month of Acyclovir and folic acid, just a few more days of magnesium and a couple of weeks of an anti-fungal drug which I’ve just been prescribed - my mouth and tongue have been a bit sore. All of these drugs can impact on the digestion. Unfortunately I do need to start taking my Bonefos again (maintenance drug which strengthens bones) and they are also indigestible! I will gradually reintroduce them when I come off the magnesium.  I’m getting a referral to a nutritionist as well so that might help me to sort out my diet. Did my last inhalation of the chest antibiotic, so that’s good!

Nothing much else to report, so will update when I next have news.

Had my endoscopy this morning. Even though I’d had one before I was still nervous. I have a strong gag reflex. They had to give me a small mouthpiece (to guide the tube and stop you biting it) as the big one was impossible for me to take. You have a spray on the back of your throat and I had sedation (not everyone wants or needs it). Although you are semi-awake for the procedure, most people really do forget about most of it afterwards - I think I am forgetting more as time goes on! The whole thing only lasts about 5 minutes and really isn’t too bad. There are good website animations of the process which I will put in as links on the Bupa site and the NHS site.

My stomach is fine but they discovered I had a small hiatus hernia (also explained on the websites  - Bupa has excellent animation) which is letting acid up into the oesophagus. I think it just means I will have to keep taking the medication - was given two leaflets, but they didn’t tell me anything I don’t know already. They don’t normally do surgery unless the hernias get worse. However, nothing seems to explain the twinges! I have to say they are getting better slowly.I think I may have to wait until I stop taking the medication, which I suspect makes things much worse.

Anyway, pleased I have nothing serious. Now tired and have a sore throat - and heartburn as well as wind (they pump air in your tummy)!! Will write again next week if I get bone marrow results.

Had bone marrow test today - always a bit painful,  as I’d already had four and I think I tense up! But not too bad and pretty quick - now a bit sore but in fact the worst thing is my plaster is my dressing is itching! I’m not taking it off yet as I’ve bled a bit and want to keep it free from infection for a bit longer. Haematology short-staffed as one of the nurses has fallen on the ice and broken her arm poor thing. Last week was really difficult for them with only one nurse and another on leave.

Now only the endoscopy on Friday. Today my digestion is a bit better, so let’s hope that continues. Weirdly I always feel better after eating boiled or baked potatoes….!

Despite still struggling with bad digestive problems I have had good news this week at the clinic. Both my light chain levels and paraproteins indicate full remission - I am going to have a bone marrow test on Tuesday to see whether that agrees. Obviously remission can be short - could be as little as a year - but it could be several years, so let’s be optimistic!

It was interesting as it took me a day or so for this to sink in and also I suddenly realised that blood tests might be nerve-wracking as time goes on, in case the myeloma reappears. But at the mo I’m still in recovery, so won’t be worrying yet.

My digestive problems have been up and down - awful yesterday, so I’ve only eaten a small amount today to give it all a rest. Suspect a vegetarian cottage pie to have triggered it. I will have something simple like potatoes tonight. I just hope they can diagnose and treat it after the endoscopy on Friday. Not really looking forward to it or the bone marrow - my hips ache and are tender, so it could be a bit more painful this time. But on the plus side I have several visitors this week to cheer me up!

Will try to update a bit quicker this time after my tests, although I’ll only get the bone marrow results the week after.

Hi everyone and apologies for being so slow to update. I have a not very good excuse - Bob did some improvements on the appearance of the blog, but changed the password. It’s been tabbed on my main computer so it comes up automatically, but I accidentally deleted the tab on my laptop and now he can’t remember the new password. To be honest I can probably easily get it, but haven’t had the oomph.

The last two weeks I’ve had real problems with my digestion and some other symptoms. I don’t know what precipitated them. I had restarted my magnesium tablets which are prone to causing diarrhoea - but I haven’t had a problem with that. Basically my acid reflux came back with a vengeance accompanied with a sort of twinging/cramping in my bowels and stomach. Worse after meals. It’s like everything is sore all the way down and I am sensing the digestive muscle contractions. I have discovered that this can be a symptom of IBS.

I have also been much more  tired - napping sometimes both morning and late afternoon.  My hips and legs ache sometimes quite badly and I itch mostly on my back and trunk.  Small red spots come up under the skin, not as an entire rash but mostly on my trunk, and my skin is dry. But appetite still good. Blood levels: Haemaglobin and platelets up, white cells and neutrafils fairly static. The latter are now at the bottom of the normal range. Temperature fine.

After a while I began to think this might be an allergy and in fact the aches and skin problem did seem to fit with the acylovir. Last weekend I was a bit naughty and just stopped it on Saturday. I had run out of magnesium and the prescription wasn’t picked up, so I wasn’t on that either. But things didn’t especially get better - although I was only off them for 2 to 3 days. After discussions with my consultant I realised I had to go back on ayclovir as it protects against shingles which can be very nasty. I also need to boost the magnesium - I discovered that my inhaled antibiotic, pentamadine, can lower levels too - so will have to persevere with it for at least another week. The itching maybe partly due to hairs regrowing (although not entirely convinced). Anyway I have been given another anti acid reflux which I am taking in between the one I normally take (or they will clash), and an anti-spasmodic, which seemed to work on my bowel but not my stomach. Unfortunately all the medicines I take can actually affect the digestive system in bad ways too! I am booked in to have another look down into my stomach, but not for a couple of weeks.

I am trying hard to deal with the symptoms by diet and relaxation too. I used to keep a diary of medication, food and general notes, which I allowed to fizzle out in hospital, which was silly. I have restarted it and hope to see what makes it worse. Drinking lots of water helps with the reflux, although does mean lots of visits to the loo! I have also got a relaxation CD which I have found very useful - it is interesting that during the half hour sessions, my cramps do lessen! It is also true that I had been feeling more down and stressed in the weeks beforehand, so this may have contributed. I am going on the cross trainer every day and can now do 5 mins, although very slowly. I have been allowed to start taking my probiotic soya yoghurts and I’m also taking spoonfuls of manuka honey.

I think on the whole the symptoms have eased marginally, although sometimes flare up, which is why I must record them.

I’m not averse to the naps. I really didn’t sleep enough before and if I can’t always get to sleep for ages, it’s probably good to nap. As my consultant says, the body is using energy to repair itself at the mo.

To entertain myself I’ve been on the computer a lot, dealing with trades council business, discussing politics and also replying to lots of emails from friends and family. Thanks again to everyone who is in contact. I feel more positive now and feel that I have to see this as a temporary setback. Maybe after a look inside the hospital can suggest some more solutions. I guess I was left vulnerable after my mucositis - even my mouth and tongue still feel strange.

Although the snow is very pretty it will be good to get to spring, when I can sit outside and maybe get fit enough to walk a bit more. Will try to do  my next update sometime after my next appointment next Wed.  Take care!

Not much to report. My levels of white cells, platelets, haemoglobin and neutraphils are crawling upwards very slowly. They are cutting my hospital visits to once a week which is good and will save money too. I had to spend another hour breathing in antibiotic - only have to do it once more in a months time thank goodness as it tastes absolutely horrid and despite using pillows to prop my arms up it is very tiring holding up the tubing. I ache a fair bit which apparently is part of the stem cell recovery  or something - although I am also sleeping propped up which is making my neck ache. The skin flaking seems to be nearly over - just on my legs and feet. But a lot more pins and needles in my feet and sore fingers.

I have resumed, after quite a long gap, doing some stretching exercises I have done for years every morning, following advice from a chiropracter after I pulled ligaments in my back. I was amazed how much my joints and muscles have seized up - it will take a while to sort them out. I am trying to do a bit on the treadmill more regularly too.

Despite eating more I’m still not putting on weight - I might get a good protein supplement. More annoyingly my facial hair has started to grow again! I always thought I’d lose all my body hair, but haven’t in fact - most of my scalp lost hair except a few wisps, but my eyebrows just thinned a bit, as did other areas.  Oh well, back to the tweezers! My scalp is quite dry, so I’ve been creaming it. Bob thinks it looks darker, so we’re wondering whether my hair will start to regrow soon. I saw a picture of Jade Goody following her chemo - she has a lovely shaped head  and ears and looked much better bald than I do!!! I feel sorry that someone so young has had to go through it all.

I’ve had several visitors this week and one of my brothers (who has a leg in plaster following a tendon operation) is coming on Monday. I really like visitors as I get so bored and also I feel perkier after a good gossip! Also been on the computer quite a lot. Unfortunately my blog is suddenly being plagued by spam at the mo - Bob is at this very moment trying to set up systems to block it. These people are so disgusting - complete parasites!!!

Didn’t realise how long it was since I last wrote. I did have a grotty couple of weeks and in fact had a moan to our MacMillan nurse, who was very good as always. It is good to talk to someone outside family and friends - not that everyone isn’t brilliantly supportive - but perhaps you can say things to outsiders that you wouldn’t say to people who are closer. I did feel better afterwards and in fact despite feeling physically still very up and down I have felt mentally a bit better.

On Sunday I did quite a bit, including a very slow 20 minute walk down to the lake and back with Bob to enjoy the sunshine. I also did a few bits of minor housework and even a little bit of ironing. Today I paid for it - had to sleep all morning and stayed in bed all pm. Got up only for dinner. But it shows that there will be better days and also that I am gradually getting stronger. I also feel like eating a bit more now, despite the bad taste and acid reflux which is really bugging me still.

Have had a lot of people contact me which is great and really has helped, so many thanks. I am trying to keep busy, doing bits on the computer, union stuff, reading (weirdly I picked up my old omnibus of Sherlock Holmes!), and doing crosswords etc.

I am thinking about holidays too - I think I will try to book us a week self catering at Easter. Probably not too far away. But we need a holiday even if it’s very quiet - something to look forward to. Bob is still so busy and will need a break. I won’t be allowed to garden until my levels are better - there is a fungus in compost and rotting foliage I mustn’t breathe (also stops Bob doing DIY as it’s in plaster dust). But I am trying to plan for when I can get out there. It will be good to just sit out in the garden. So all in all trying to take a more positive view!

Last few days have been rather up and down. My sore throat went away, but I developed a bit of a cough and over the weekend my temperature went up and down a bit. I ended up going to the ward both Sat evening and Sun morning, but both times my temp had gone down by the time I got there and all other indicators were negative, so I was sent back home feeling a bit of a fraud. However, I was given precautionary antibiotics on Sunday. Poor Bob had to do the taxi work, on top of everything else.

Had a clinic appointment today. My neutraphils and white cell count have slid down, reflecting my cold/cough although my platelets and haemoglobin are holding up OK. I had to do a nasal aspirate as I couldn’t cough up a sputum sample. I was a bit worried, as it didn’t sound good, but in fact you just squirt saline up alternate nostrils and for each one, you hold the other nostril shut and blow hard down the nostril into a test tube. Potentially a bit revolting - you have to wear a plastic apron in case of dribbles etc!

The potentially good news is that my light chain measures have come back from London and look very low (the lower the better). These measures are not always reliable, so I’ll have another test sent off next week, but if that is so then it’s great!

I needed a bit of cheering up as frankly I have felt quite low all week - v. tired, nausea sometimes (possibly the magnesium and latterly the antibiotics), loose bowels (the magnesium again - have cut the dose by half) and then the cold. I think psychologically I approached all my treatment up to and including the actual transplant, in a relatively positive way and then expected somehow that it would all be easier afterwards, whereas in fact it’s going to be a slog, with ups and downs. I have expected too much and need to adopt a more pragmatic view, listening to what my body tells me and remembering that at some stage I will start to feel better, maybe for the odd day to start with, but eventually for longer blocks of time. I also need to realise that although I can rationalise my situation, there are times when I’m going to feel fed up and that’s OK and perfectly understandable.

Lastly, apologies to anyone who has sent me a letter or email and hasn’t had a reply - I will manage it at some stage but I am still working through all my Xmas/New Year correspondence!

Neutraphils now 2.00 and platelets good. Haemoglobin marginally up. However, magnesium and potassium down, which maybe accounts for my horrible lethargy over the last couple of days. Apparently this might be partly due to my loose bowels as the salts wash out more easily. On potassium tablets for 3 days and will also be taking magnesium - haven’t got them yet.

Woke with rough throat today which meant poor Bob had to take me into the clinic to check me out. But all other indicators seem OK so question of waiting to see if anything develops. Maybe partly the acid reflux? Have a throat spray.

Still feeling very tired, so resting and dozing this afternoon.

Meant to say thanks to all who have commented on my blog - good to know that people are reading it. Forgive me for not emailing you all directly!

Sorry it’s been so long since I last wrote and I know some people wondered whether I was OK. Mixture of tiredness, laziness and not much to report really. I am still at home, taking it very easy. Some days I don’t feel like doing much at all and other days I can do the odd thing or two. I’ve really had to take on board the tiredness I was warned about. It doesn’t mean I sleep much - I still get poor nights. I do nap sometimes. But it’s the general weakness and lethargy which frustrates me. Also, my digestive system has not really settled down at all, so I’m on the loo quite a bit and any roughage goes straight through. I still get acid reflux and my taste buds have not returned to normal. Generally boring diet. I am going to try really hard to exercise a bit each day - I can do 120 ‘pulls’ on the cross trainer very slowly but then I have to sit down for quite a while.

My neutraphils are now 1.34 - nearing normal. My haemaglobin is low, but I will be taking folic acid. I should only need another week of Clexane injections for my clots. I am also off lots of medication now. I just hope I can avoid all the bugs going around.I had a bit of a chat recently with my consultant and apparently you have to wait a bit before you can assess what impact the transplant has had. I still have traces of paraprotein but they may decline further. Later I’ll have another bone marrow test. At the mo I’m really not thinking about it at all - I really do take it a day at a time. My brain has switched off thinking about things.

I was pleased with myself yesterday as the family all went off on a long round trip to my in-laws. During the day I alternated resting and watching the old Colin Firth Pride and Prejudice series on some dire channel with lots of ad breaks, with doing bits and pieces. I must have done about 4 or 5 lots of washing. I also cooked dinner. Had to do it bit at a time, very slowly. Do potatoes, sit down. Do carrots, sit down. Mix gravy sit down etc. I was shattered by the time everyone got back and they dished up, but at least I felt I had accomplished something. Today I’ve paid for it by being very tired! Was a real effort to shower and go to the hospital.

Not much else to say really. Everyone in the family getting back to work - I will have to think about how I get to hospital appointments. It’s about £20 round taxi trip, so I may register with the volunteer drivers scheme. Luckily it looks like I’ll only be going in twice a week normally.

I have heaps of paperwork to do, so maybe I’ll start on that tomorrow. Will try to write again soon.