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!