Relatively normal

Oh my goodness, how long has it been since I properly wrote anything here? Those of you who are distant strangers may well have feared that I was no longer around. I am! I am still very much around and in remarkably good shape.

I’m one of the lucky ones. Yes, my auto transplant failed very quickly, but since my allo transplant, I’ve had really very few issues. I’ve had very few infections or hospital admissions and certainly nothing too serious. I’ve had some Graft versus Host Disease [GvHD], but it has been only mild to moderate. (Makes it sound like the shipping bulletin.) Nothing life-threatening. And these days it’s all stable and very mild.

I’ve been discharged from Respiratory clinic, now that I’ve passed the milestone of the first two years post-transplant – the peak risk period for lung GvHD. My lungs, while not recovering any function, have not lost any either. In fact they have remained stable since I started treatment. I was sad to say goodbye to the lovely Dr Fogarty.

I still have regular ECP [extracorporeal photopheresis] treatment to keep stable or maybe even further improve the minimal GvHD (lung, scleroderma, mouth, vagina) I have now. The ECP treatments are now only every eight weeks and may well decrease in frequency after my next GvHD clinic appointment. I still attend Transplant clinic, but that is also around 8-12 weekly. It’s all a lot less prominent in my diary and in my life, thus the vagueness.

With my discharge from Respiratory monitoring, I was also able to stop taking Azithromycin and a Becotide (steroid) inhaler. I still take a good old handful of tablets – Aciclovir, Penicillin, Imatinib, Omeprazole and Prednisolone, but this latter is now down to only 4mg a day and I’m on track to reduce it by 1mg each month. So hopefully by November, I won’t be taking any steroids. I also take a supplement of Glucosamine Sulphate and Chondroitin; I went through a period of leg, hand and foot cramps and joint pains, which have fortunately stopped since taking the supplement. I’m hoping to stop taking them soon too.

Strangely, as my clinical needs diminish, attending appointments has changed from being a regular and quite enjoyable part of my weekly/monthly routine to more of an inconvenience or chore, something that gets in the way of the other things I was doing, whereas previously, they WERE the things I was doing. I never thought I’d get to feel like that and I’m not sure I like it. It’s the normalising of my life, which many people would hugely welcome, that I actually find tricky to manage psychologically. I had a role as a patient; I’m not really sure of my purpose now.

Don’t get me wrong… As those of you who know me in real life, or on Facebook, will be aware, I do a lot – volunteering, Playback Theatre, networking, painting and other creative arts, training and workshops, knitting, socialising, travelling. People frequently advise me to slow down and take it easy. But that’s not me, that’s not what I’m drawn to do. I still want to make an impact on the world; make a difference; be creative; see, do and be as much as I can; make the most of my life.

Finding a balance between those desires and the need to relax, rest and ground myself has always been difficult for me. Maybe that’s why ‘returning to normal’ feels so hard, because now I also return to my ‘normal’ (pre-cancer) way of being in the world and have to manage myself in a way that I haven’t needed to do while I was really ill or recovering from treatment. For most of the past four years, I have managed – I know not how – to find a very zen-like state of acceptance without really trying. An acceptance not just of having cancer and facing death, but also of myself, my purpose, the meaning (or lack thereof) of life and the world around me. For most of that time, I was relatively free of anxiety.

I am certain that will sound very bizarre to anyone who has not been in this situation, and maybe for some who have been in a similar place but have reacted differently to me, it may be hard to comprehend. But there you have it! That’s my truth.

And now… In so many ways, I’m ‘back to normal’…

And yet, it’s not quite the same. I can forget to some degree and much of the time what I’ve been through and that the myeloma will likely return. It is still deemed incurable after all. And I don’t spend much mental energy thinking about it, but it is still there. An ever-present fine haze over my life.

But it’s when I do forget that I get caught up again in the day-to-day anxieties of ‘normal’ life; I lose a sense of meaning and purpose in my life. So the haze is really not a bad thing; in fact I appreciate its presence. I appreciate being able to hold on to that potential relapse as a reminder to keep making my life count, to make it mine, to make it worthwhile, to make it something I can look back on and be pleased with how I spent my time, to be able to die knowing I have no regrets.

Phoebe Snow, singing a beautiful version of the Billie Holliday song, ‘No Regrets’. Phoebe Snow died in April 2011, not long after my diagnosis. I hope she died with no regrets either.

Out and About After Shingles

I was freed from hospital on Monday after what proved a light bout of shingles. I have been given a short course of valaciclovir and will then return to probably 3 months of aciclovir. Valaciclovir has some advantages – see Today I discussed the whole thing with my consultant. She said that when people have been taken off prophylactic aciclovir about 40% will get shingles in the next couple of months. Nobody knows quite why this happens. But if I take another course and then come off it in a few months it shouldn’t happen again.

As it stands it wasn’t much of an issue for me, except the fact I endured 8 days of isolation. Maybe people need to be warned though, as it can be nasty for people who are immunocompromised and the more quickly it can be caught the better.

I paced about a lot trying to keep my muscles fit, and it seems to have worked fairly well as yesterday and today I have done my usual walking, although am very tired afterwards. I do think that all patients on visits of more than a few days and who aren’t immobilised should be given suggestions for gentle exercises, some of which can be done seated. We had a small foot pedal machine at Leicester, which was helpful.

I had a new round of blood tests today, including a free light chain one (shows my disease level) and also my immune system levels. I won’t know the results for a while, unless there is a problem. My next immunoglobulin drip will be here in Northampton next Monday, instead of Leicester, which will be very helpful.

Not sure if anyone from Northampton reads my blog, but I have to say that the staff were all great while I was in – from cleaners to consultants. They are working under tremendous pressure and staff shortages, but are always cheerful and helpful.

Shingles AGAIN!

Well I was only saying to a friend last week that I hadn’t had a spell in hospital since last December… but here I am. Started last Saturday when I started scratching an itch on my right trunk to the side and it was quite sore. I had been feeling vaguely unwell for a couple of days – very tired. So when I looked a saw a small patch of shingle I knew I had to act fast.

I had been taken off aciclovir tablets only a couple of months ago, having been on them for years, so I was probably vulnerable. As it was I immediately took one of my remaining tablets and got myself off to hospital – I was lucky as Northampton had a bed available in the cancer ward.

As I’m immunocompromised I have to have IV aciclovir for maybe 5 to 7 days – a really hefty dose 3 times a day. Also I’m in isolation, as I could infect a patient who hasn’t had chicken pox. The med is very strong and sometimes it hurts as it goes in. The flushing afterwards is really painful. Apparently local inflammation is common in up to 10% of cases. I had to have the first cannula out when the back of my hand swelled up and I started to leak aciclovir!

Apart from that my spots have not spread and there hasn’t been too much pain. It’s in the same area as before. Last time I was in agony, but I have more of a generalised aching this time. The drug has made me a bit queasy. Just beware that in big doses it can damage the kidneys and liver, so drink plenty if you have to take it. Also, rarely it can cause mental problems like hallucinations, so if you start feeling a bit weird, then tell somebody straight away.

I have taken the opportunity to get the place where my line was to be checked. It was dug out hurriedly when I had an infection before Xmas (though it probably wasn’t the cause) and left a scar which seemed to heal OK. But for some weeks it has been red and a bit sore and lumpy round the site. So off to x-ray at some stage to make sure nothing was left in there, like the cuff.

Will update again when I’m let out!

Not normal

Friends, family, acquaintances, fellow cancer patients, the public at large see me running around, having fun, being busy, volunteering, travelling, visiting friends, driving a big fancy new car that I could not afford without a Motability lease, going out to dinner and concerts, speeding around the country, planning a house extension, doing courses, buying clothes and treats. It looks like fun.

Some may even feel envious, resentful. Yes, I have seen it. And I’ve experienced some pretty bad behaviour. What??? Yes, I know!

Don’t get me wrong. It IS fun. A LOT of fun. I’m having a blast. At the moment, a lot of how I’m feeling is down to the euphoric effect of the steroids I’m taking. But even without the steroids, life is good at present.

Good, but definitely NOT normal. Or not the normal-for-me that I used to know.

I don’t feel sorry or sad about it. I don’t mourn for my old life. I am lucky that my character has allowed me to accept how things are relatively easily. Everyone deals with the initial shock and horror of a cancer diagnosis in their own way, but there is usually anger, disbelief, grief, fear, etc. However as time passes, that can change and it has for me. I don’t claim any great enlightenment skills. I pretty much surrendered to it all from the beginning and that has worked well for me.

This is not the case for everyone though. I have met people, even at a similar way down the cancer road to me, who are not at ease, who rail against it all, angry, heartbreakingly sad and resentful that this is not the life they want, that they’re not getting what they think life promised them. I can’t say I don’t judge them for it, but I certainly do not judge them harshly. I wish them ease and acceptance. But each of us has our own journey, so they will hopefully find something they need along their path, a much harder path it seems to me.

I cannot say that I’ve enjoyed the journey, and there have definitely been times that have been really tough, that I can’t explain to someone who hasn’t been through something similar, at least not in a way that they can really ‘get it’.

I am fortunate that I have good care, good loving people around me, access to free-to-me medication from the wonderful National Health Service [NHS], access to both government benefits and financial support from my family that allow me to do all those things above. And that allow me not to live in fear of extreme poverty that I know others face.

BUT it is NOT normal.

I am writing this at 5:45am on a Wednesday morning, in a fresh, modern, very comfortable, hotel-style bedroom at the Penny Brohn Cancer Care Centre, where I’m participating on a Living Well with Cancer 2-day residential course. All free!

I’m wide awake and have been for over an hour. I look to my right, to the bedside table and see the medicinal accoutrements of my life.

This is a list of all the medication I take currently:
Penicillin (antibiotic) as prophylactic
Aciclovir (antiviral) as prophylactic
Fluoxetine (antidepressant)
Imatinib (protein tyrosine kinase inhibitor) for lung GvHD, although usually prescribed for Chronic myeloid leukaemia [CML]
Prednisolone (steroid) for lung and sclerodermatous GvHD
Montelukast (Leukotriene antagonist) for lung GvHD/asthma
Lansoprazole (proton pump inhibitor) to protect my stomach/guts against the other meds
Azithromycin (antibiotic) for lung GvHD
Alendronic acid for bone protection due to osteoporosis
Seretide inhaler (steroid) for lung GvHD, complete with an AeroChamber Plus for administering the drug
Posaconazole (antifungal) to protect against oral thrush
Nystatin (antifungal) to treat oral thrush
Vagifem (oestrogen pessary) for vaginal GvHD
Lacrilube ointment for dry eyes
Systane Ultra eye drops for dry eyes
Omega 7 for dry eyes (not prescribed – food supplement)
Menopace Plus for post-menopausal well-being (not prescribed – food supplement)
Eyebag (a heat pad for the eyes) for dry eyes

In my handbag I always have a supply of the Systane eye drops, Paracetamol and Codeine tablets and boiled sweets or mints (nothing too strong) for my mouth. Yes, I know sugar isn’t good for thrush, but that’s my choice. I can live with the thrush. It won’t kill me and it will go once I’m no longer on the steroids. This conversation is NOT normal. But it is for me these days.

I’m aware of a tightness in my torso and lungs, tingling in my feet and legs, stiffness in my legs and vague aches at my knees and elbows. I know when I get out of bed in an hour or two, that I shall not be nimble, despite the steroids. I huff and puff and cannot bend well to put on underwear, pants, socks, bras. None of this stops me, but it is NOT normal.

I know that later in the day my eyes will become blurry due to the steroids and neither the eye drops nor the eye bag really make much impact, or not for long. This has affected my day-to-day existence. My friend, concerned for me, insisted on driving me to/from Bristol. It was relaxing being chauffeur-driven, but it’s NOT normal.

I have a whole new vocabulary of medical terminology. I have become an expert patient. My immune system may be compromised but my scientific curiosity has been energised. I enjoy learning all about this disease and it’s treatment. This is NOT normal. I was never a scientist.

Many cancer patients and probably others who develop diseases/conditions that are life-shortening, who had a ‘normal’ life previously, talk about “the new normal”. And this is how my life is now.

18 month post-transplant review

IMG_2306Today is 18 months to the day after my allogeneic transplant. It’s my 18-month-iversary!

I’m alive, pretty well for the most part, looking and feeling good. So today is worthy of a celebration, although it is more of a quiet nod of acknowledgment than a champagne party.

Here’s a review of my current health status:

  • The myeloma is in remission. Hurray!
  • I still have 100% chimerism. Hurray!
  • All blood counts are within normal range (apart from slightly raised eosinophils, which can be indicative of Graft versus Host Disease, so no-one is concerned about them)
  • Graft versus Host Disease [GvHD] continues to make my mouth dry, tight and sensitive. No treatment has worked, I still cannot cope with spicy or hot foods/drinks. Either it has slightly improved or I have adapted to it. It doesn’t bother me as much as it did previously.
  • GvHD, in combination with being post-menopausal, also continues to make my vagina dry, tight and sensitive. I get some benefit from using Vagifem oestrogen pessaries, but mostly I just live with it.
  • I had two smear tests. The first attempt was very painful, I bled and they didn’t manage to collect sufficient cells, so it had to be redone three months later. That was slightly less painful, with no bleeding and a successful collection. The result was clear. Hurray!
  • I have had a successful mammogram. All clear. Hurray!
  • For over six months, I have been experiencing tightness and loss of flexibility in my muscles, most noticeable in my legs and arms, but also affecting fingers and other muscles. It has been investigated, with no clear outcome. My consultant is now willing to consider that GvHD may be the cause (which is what I had said all along). I will write about this in more detail in another post.
  • I am seeing a Physiotherapist to help with the muscle problem but I’m not impressed so far. He has never come across these particular symptoms before, so he has given me a sheet of generic exercises to do daily, but I’ve only done them once. I don’t believe they will make any difference.
  • A recent MRI scan showed some deterioration of my T12, L1, L2 and L3 spinal vertebrae, most of which was evident in the skeletal survey carried out on diagnosis in 2011. A bone density scan was recommended however to check for osteoporosis. I’ve had the scan, but not seen the results yet.
  • I have completed the full course of Zometa (bone strengthener). Over two years, I’ve had eight four-weekly infusions, then eight eight-weekly infusions. After that, the risk of osteonecrosis of the jaw [ONJ] is deemed too high to continue taking the bisphosphonate medication.
  • Slightly more worryingly, my lung function has decreased over the past months, since the transplant. A CT scan has been requested to see if there is any lung damage caused by GvHD. The loss of lung function could just be residual effects from a recent cold virus. If it is GvHD, there is no treatment. It usually remains at the decreased level, but is unlikely to get worse.
  • As well as muscle tightness, I have recently been experiencing aching knee and elbow joints, particularly at night and on waking. This is very new and I haven’t mentioned it to a consultant yet.
  • I experience fatigue on a daily basis, usually feeling sleepy around 4-6pm, finding it difficult to do much in the evening, often sleeping for up to ten hours a night and finding it hard to get out of bed in the morning. It doesn’t really stop me from doing things I want to do, but perhaps it should…?
  • your brain after chemoOn top of the fatigue is chemo brain: short-term memory loss, inability to retrieve words, almost impossible to multi-task, short attention span, difficulty concentrating and reading, etc. I’m reading (or trying to read) a book to help me manage it. More on this subject in another post.
  • I am still taking anti-depressants. I weaned off them in the summer, but began experiencing anxiety again, so after discussion with my GP, I recommenced taking them. I now feel emotionally stable and will continue taking them for a while yet.
  • After all the excitement over sleep apnoea/UARS mentioned in previous posts, I don’t use the CPAP machine absolutely every night, as it still annoys/upsets me. However I do use it if I’m sharing a room, out of courtesy.
  • At an optician’s appointment, I found out that my eyes watering, which I thought was due to tiredness and fatigue, is actually a condition called dry eye. It is caused by Meibomian Gland Dysfunction. It is a common problem with age, although it can also be a side effect of taking Fluoxetine. Treatment is with an Eyebag and lubricant eye drops. I will write about the dry eye story in more detail in another post.
  • Weird side effect of who-knows-which-bit-of-treatment is that my nose always runs whenever I eat, hot and cold food alike. I don’t have a cold or an allergy… just a runny nose!
  • IMG_2623Daily, the prescribed drugs I take are Penicillin, Aciclovir and Fluoxetine. I add Menopace, a menopause vitamin supplement and have just started taking Omega-7 to help with the dry eye. According to the blurb, it may also help the mucous membranes of my mouth and vagina. I’ll let you know how I get on. In the meantime, I love how the added orangey-red capsules make my tablet boxes a lot more colourful.

And a quick review of my current activities:

  • Tai Chi classes continue twice a week and I now assist the teacher with a new beginners’ class
  • Volunteering for Citizens’ Eye Derby continues
  • Following a Mindfulness course at the Nottingham Maggie’s Centre, a few of us continue meeting weekly or fortnightly to support our mindfulness practice
  • I have started swimming once a week with a friend, usually doing a minimum of 30 lengths (half a mile)
  • I recently participated in a Playback Theatre UK annual gathering and am looking forward to further training and workshops
  • IMG_2614Having relearned to knit, I have begun a new project to make handwarmers – photos will follow when completed
  • I proudly write a four-weekly column for the Nottingham Post newspaper and am looking for other writing opportunities to earn an income.
  • I have my fingers in a few exciting, creative project pies, which are in various stages of coming into being. Life is exciting!
  • I am not blogging much, which I miss, but somehow don’t find time, energy or head space to write, even though I have lots to share.

So, there we are then. Not the most riveting of posts, but I wanted to mark the day with an update, as much a record for myself as anything. I need to publish it now as it’s way past midnight and my anniversary is over. Roll on two years! Then I might have a more lively celebration.

In the meantime, I hope I can blog a bit more frequently. Any hints or tips on how to keep up with blogging regularly will be warmly welcomed.

January 2013

January 2013 marks eight months post-transplant, so time for an update…

I’m well and truly over the virus I had over New Year… and the accompanying anxiety.

My blood counts remain good. I don’t even look at the results now.

The result of the most recent serum-free light-chain test (the test for my type of myeloma) had not yet come back at my last clinic visit, probably due to the winter holidays, but I’ve not heard anything since, so it’s probably the same as the last one, in which the myeloma was undetectable.

They will continue to test every two months, so any relapse will be spotted in good time. I’m aware that many of my fellow myeloma buddies who are in remission get very anxious each time they have a blood test or clinic appointment. Fortunately, so far, I don’t experience any anxiety, but that may change in the future, when clinic visits are further apart and therefore become more of a ‘special event’.

The last chimerism test showed 100%, i.e. the donor cells have completely taken over my immune system. Chimerism can fluctuate, so they continue to test every 3 months for two years. They did a chimerism test at my last clinic visit, from which I’ve also not had any results, but I’m not at all concerned about it. Even though I know it can be otherwise, I expect it to stay at 100%. To be honest, I don’t even think about it.

A leukaemia patient I see in clinic, who is six months post-transplant, told me she hasn’t achieved 100% chimerism, so she will be having a “top-up”. This is the colloquial term for a Donor Lymphocyte Infusion [DLI], where they give an infusion of lymphocytes (white blood cells) from the same stem cell donor, without the need for chemotherapy and therefore a LOT less risky than a further full stem cell transplant. However a DLI can often cause more of a Graft versus Host reaction [GvHD].

Another leukaemia friend from clinic has not had any GvHD from her transplant eleven months ago, so she too may be facing a DLI in order to achieve not only a Graft versus Host response, but more importantly, a Graft versus Leukaemia response. In her case, they will need to ask the donor to donate again as they have already used his initial ‘donation’. She’s so greedy!

For more information about DLI, I found a very informative leaflet published by Leukaemia and Lymphoma Research. I was tickled to see that it features on its cover, a photo of Prof Nigel Russell and Emma (stem cell nurse specialist) from Nottingham City Hospital.

Fortunately, with 100% chimerism and some mild GvHD, I don’t need a DLI at this point, but it may be required if I relapse.

I am also still receiving infusions of Zometa (Zoledronate) to protect my bones. Initially, I had it every four weeks, but after eight months, they only give it every eight weeks. I will have a total of 16 infusions over approximately two years. After that point, there is an increased risk of osteonecrosis of the jaw [ONJ], so they stop.

Another issue is, as Wiki says: “Zoledronate is rapidly processed via the kidneys; consequently its administration is not recommended for patients with reduced renal function or kidney disease.“ Fortunately, my kidneys have improved since I was first diagnosed, no longer a subject of concern. It’s a testament to their relatively good health that I can actually receive Zometa. I couldn’t even start receiving it until September last year because they were in such poor shape.

Zometa bruiseI had Zometa infusion number eleven last week. Fortunately, it only takes fifteen minutes, plus a flush before and after, so I wasn’t in Daycase for long. Annoyingly, I had that same irritating nurse, who although she cannulated me on her first attempt, managed to create a big blue tender bruise on my hand. Owwwww!

Tuesday's pillsMy days of taking huge quantities of tablets are over for now. In the early days, I needed a chart to keep track of what to take when, at another point I had to buy an additional pill box just to contain them all. Now, it’s quite simple… just seven tablets a day – Aciclovir, Penicillin and Fluoxetine (Prozac).

The major thing that is not okay is my mouth – I still have oral Graft versus Host Disease. I mentioned previously the various treatments we have tried to reduce the soreness in my mouth. None have had any impact at all. My mouth and lips still feel tight, sore, dry and very sensitive, especially to sharp tastes like pepper, chilli, vinegar, hot drinks/foods, crusty bread or crisps. And some everyday activities make me wince… flossing my teeth, yawning or when I accidentally jab myself with a fork when eating. From time to time I get blisters – on my tongue, inside my lips or cheek. Neither the sensitivity nor the blisters stop me from eating (heaven forbid!), but they do affect my food choices and are an ongoing discomfort. It might improve… or get worse… or stay exactly the same. Nothing I can do about it!

The worst of it is when I brush my teeth with a regular mint toothpaste. I do occasionally use a fennel one from the health shop, but while I like the taste and it doesn’t hurt my mouth, I don’t quite trust its efficacy for maintaining my teeth, which need all the help they can get. However, I will be seeing my dentist for a check-up tomorrow, so I will ask her advice.

I probably need to mention, for the sake of complete honesty, that I am still having treatment for the genital warts. Without ongoing attention, they flare up again, despite the antiviral tablets. They aren’t really a problem, it’s just that I’d rather not have them, of course. I went to the GUM clinic again last week. I’m not wincing from the cryogun freezing as much now. And I don’t think any further details are required.

There are some more minor issues, which include fatigue and low-level depression – yes, despite the antidepressants, which I am doing my best to accept (more on this later); difficulty getting to sleep and waking during the night, which may be part of the fatigue; a slight skin rash and blackheads on either side of my cheekbones, which I generally ignore for the most part and am hoping will disappear at some point.

So, today is exactly eight months and one week post-transplant. It’s looking pretty good overall, but it is still early days. N.B. ‘Early days’ continues for the first two years.

Six months on

16 November marked six months post-transplant, so time for a quick update. And it’s mostly good news…

The frequency of my clinic appointments is going down, as is the number of drugs I’m now taking.

When I first came out of hospital, I was going to the Haematology unit twice a week to keep an eye on Ciclosporin levels. After about a month, that went down to weekly visits. About a month ago, everything was going so well that they said I could now come in every two weeks. It was very strange – I barely knew what to do with myself on my week off. I only had two of these fortnightly visits before they said I could come in every four weeks, which was very odd to hear – part liberation, part abandonment.

Obviously, I’m not the only person going so regularly to clinic – there are plenty of transplant patients, mostly with leukaemia though. In fact, I haven’t met any other myeloma patients who’ve been through a donor transplant at Nottingham. So unique am I! One woman in particular, with leukaemia, is Julie B, who’s my transplant twin – we received our new stem cells on the same day, are a similar age and coincidentally we have the same initials. I’ve gotten to know and chat regularly to a few other people too, so having blood taken and seeing the consultant comes almost secondary to the ‘social club’ that meets in the waiting room.

The two times I went fortnightly, I hardly saw anyone I knew, so I realised that most of my ‘social club’ buddies must be coming on the alternate week. So when Jenny Byrne said I only needed to come every four weeks, I asked if I could come in three weeks the first time, so I could swap over and meet up with my newly acquired friends. She was happy to accommodate my request and it worked perfectly. At my visit last week, I saw Julie, Sam, Janette and others with whom I have a nodding acquaintance. It made the whole experience much more fun.

I was also approached by Madeleine, the vivacious wife of a much quieter leukaemia man, Robert, who is only one month post-transplant. She said she had seen me a few times in clinic. She said I was “always smiling”, which is why she made contact. How lovely to be seen that way!

In terms of medication, that’s all going well too for the most part. If you recall, when I came out of hospital, I started off taking no less than 41 tablets every day. That has reduced over the months, thank goodness and I am now down to taking only 7 tablets a day, if I don’t count the soluble Prednisolone (more on that later):

Aciclovir (antiviral): down from 800mg three times a day to 400mg twice a day (2 x 2 x 200mg).
Penicillin (antibiotic): I continue to take 250mg twice a day and as I understand it, that will continue forever (2 x 250mg).
Fluoxetine (antidepressant – ‘Prozac’): 20mg a day, but I plan to wean off these in a few months if I feel ok (1 x 20mg).

Quite simple now, isn’t it?

On a more intimate level, the genital warts are almost gone – just a few more blasts of the cryogun and I should be done, although I shall have to keep vigilant in future, I suspect.

The one area that is still problematic is my mouth. I started off using a mouth rinse and gargle of soluble Prednisolone (2 x 5mg), which didn’t have any effect. I attempted to use Tacrolimus paste, which was just too disgusting and then I tried Difflam mouthwash, which also didn’t work and possibly made my mouth feel worse. A nurse friend recently gave me a tube of Elugel to try, a chlorhexidine mouth gel product from France, but I’ve not tried it yet. I feel quite reluctant to put a paste or gel inside my mouth.

I had got to the point of deciding to just live with it, but alongside the mouth soreness, I was also getting a mild sore throat most mornings, which wasn’t terribly bothersome, but I thought I ought to mention it at clinic. I asked if it was GvHD, or maybe just my immune system working hard to protect me from airborne infections. At first my consultant thought it probably wasn’t GvHD, but she had a look inside my mouth and decreed that the back of my throat did look quite white, which indicated that it probably was GvHD after all.

We discussed a few possibilities, but the simplest and most cost- and time-effective thing to try is an increased dose of soluble Prednisolone, as a mouth rinse and gargle, but then swallowed (5 x 5mg dissolved in water, once a day). Taking Prednisolone will work on the guts as well as the mouth/throat, so I no longer need to continue with Budesonide for the gut GvHD.

If the Prednisolone doesn’t work for my mouth/throat, there is another therapy they can try, but it would mean having to go into Daycase four days a week for IV administration. Having so recently reduced my time at hospital, and starting to have a bit of life away from my medical status, I would really rather not have to do this, but so far, I don’t see any signs of the Prednisolone working.

Another disadvantage to taking Prednisolone is that it can cause oral thrush, due to weakening the immune system (like my immune system needs any help in that quarter!). So, yes, I now have oral thrush and am back using Nystatin solution again.

Because we want to see if the Prednisolone is working, my new four-weekly schedule has been halved again, so I’ll be back at clinic on Thursday for a mouth check. That will also be the day of my last Pentamidine nebuliser, so I must be out of the danger zone for serious lung infections.

On that count, I currently have a cough and cold, which after a week is on its way out… just like a normal person. Fingers crossed! I’ve taken good care of myself, staying at home whenever possible and obviously avoiding my immune-suppressed friends. An ex-work colleague I’ve not spoken to for a while asked me how I am the other day. When I told her I had a cold, she blithely said “oh, you’ll get over that”, which I was sure I would, but I really don’t think she appreciated how potentially dangerous even a simple cold can be to someone with compromised immunity. I must admit to taking some wry pleasure in reminding her that a cold could easily become pneumonia for me. It’s good to keep people on their toes and aware of the reality of this condition. I don’t want anyone to get complacent on me.

But generally, it’s a time of less and less – lots of reductions… Hurray! The last time they took blood, they only needed two vials… Full Blood Count (FBC) and Urea & Electrolytes (U&E) for kidney function. They have taken up to seven before now. I am not currently on any immune suppressants, so no need to test Ciclosporin levels. I’m over the most vulnerable period for contracting CMV, so that’s no longer being tested. They are satisfied that I have 100% chimerism, so that doesn’t need to be tested for another three months. My blood counts are all within the normal range and my kidney function is satisfactory. At the last serum-free light chain test, the myeloma was barely detectable and this also won’t be tested again for a few months. It’s all going in the right direction!

All of these reductions have had to be matched in another area – to celebrate perhaps…? Thanks to my friend and her talents with hair clippers and scissors, my almost freakishly long hair (we’re talking over 1 cm!!!) has now been returned to its cute buzz-cut state, which I love. So to coin a cliché, less really is more!

Breaking a taboo

It’s taken me quite some time to dare to write this post; it feels like such an unmentionable topic. But, I’m coming out… I have genital warts. There, I’ve said it! Phew! But, don’t fear, I will NOT be posting any photos this time! ;)

I’ve felt very reluctant to go public about this particular issue, for reasons which you will understand. Many readers may even think that this is just way too private and perhaps I should keep it to myself. But it’s part of my myeloma journey, and I want to be open about the whole experience. I’m also aware that other myeloma patients read this blog and it feels important to share so others can benefit, if only to know that they’re not alone and it’s ok to speak about.

It’s quite simple… my immune system has been suppressed due to the disease itself and even more so following two stem cell transplants. It is now and will continue to be compromised, so I am particularly prone to fungal, bacterial and viral infections. I now fall into the group of people who are entitled to an annual flu jab (which I’ve already had this year). I also have to take prophylactic antibiotics (Penicillin and Pentamidine) and antivirals (Aciclovir). While the antiviral medication will gradually decrease over time, I will be taking antibiotics for the rest of my life. These support mechanisms don’t eliminate my chances of catching an infection; they simply support my immune system and thereby lower the risk.

I became aware of the warts in April and mentioned them to my consultant. She was very keen that I have them treated and ‘get on top of them’ prior to the transplant, as they could readily proliferate and be harder to treat following the transplant, due to the lowered immunity. She referred me to the genitourinary medicine (GUM) clinic, otherwise known as the sexual health clinic. The doctor I saw is married to one of the haematology doctors, so she understands well the process I have gone through and the connection between my disease/treatment and my sexual health.

Initially, the doctor suggested using Warticon, which is a cream I could apply myself. They even provide a wee hand mirror so you can see what you’re doing. I didn’t see much of a response to the cream, so the doctor prescribed Aldara cream, which is used to stimulate the immune cells to manage the virus that causes the warts. That didn’t work either.

I had a gap in treatment while I went through the transplant and in the first few months of recovery from it. But since the end of September, I have been going for weekly treatments of freezing (cryosurgery) by a nurse. They spray liquid nitrogen directly onto the offending areas, using a ‘gun’. It don’t half sting!!! At last, it does seem to be working; they are vanishing. In fact, it’s working so well, that they gave me a week off! :)

Because freezing kills off all cells it touches, the healthy skin around the warts is also affected, and the nurse was concerned in case the skin broke or became painful, so she gave me some aqueous cream to use as a wash. It’s very greasy. In fact, when she advised me to ensure I washed it off after use, she explained that if I didn’t, I’d feel ready to swim the Channel… like being covered in goose fat!

I’ve asked questions and done a bit of online research too. Here are some of the answers that I wanted:

Many adults are likely to have encountered a range of viruses, but only a small percentage actually develop symptoms. This is the case with Human Papillomavirus (HPV) that causes genital warts. Most people are exposed to the virus during their life, but it has the ability to remain latent within the body over long periods – even years or decades before developing into warts, so it is usually not possible to determine exactly when, or from whom, an individual contracted the virus.

For most individuals the immune response appears to dominate and lesions (warts) never develop, or they develop but are suppressed by an immune response before the person ever realises their presence.

Other viruses that can lay dormant without causing any ill effects are Herpes Simplex (HSV) and Cytomegalovirus (CMV). I mentioned in my post “A walk in the park…” that both my donor and I were screened for CMV prior to transplant, as this can be life-threatening for the immunocompromised, whereas it typically goes unnoticed in healthy people.

I also read that persistent infections of HPV may lead to cervical cancer as a result of cellular transformation. The last thing I need is another cancer, FFS! So, it’s critical that to knock this thing on the head. I’m off for another bout of freezing on Thursday. Ouch!

Still shingly but good progress on the myeloma front

Firstly many thanks to those who have left comments and sorry I didn’t respond individually – it has been one of those weeks! It is good to know the blog can be useful.

Well I’d hoped that I’d be feeling a lot better by now, but despite the last scab falling off the rash is still very painful – it looks raw in places where the scabs came off and the whole area is tender and prickly. Not only that but almost since the start I have had very weird electric shock type nerve contractions centre/side back mostly when lying down on my right and sometimes left side. I end up having to sleep slightly propped up or flat on my back, which I hate. I’m hoping that this will gradually go, as I know that you can be left with this sort of thing for months.

In the meantime I have continued with the imipramine – no idea whether it is doing anything – and am trying Vaseline on the rash. Also I have been put on a low daily dose of aciclovir to prevent me getting another bout of shingles – what a thought!

I did get an extra week off my treatment, and restarted last Tuesday. The good news was that another test showed my light chains down again! Of course the side-effects are making me a bit down – by Sat I’m usually pretty grotty – but I’m taking it very easy!

Despite it all I have actually tried to keep busy – stacks of anti-cuts work via emails have taken up a lot of time. I have also tried to do some physical activity every day, even if it is housework!

Well – not much other news. I see from emails I get from the International MM Federation that there are lots of new drugs and regimes being tested, so hopefully as time goes by, MM will become much more of a chronic condition.

I hope you all have a good Xmas and I’ll write again soon.

Its been a long time, sorry :-)

Hi all,

I am so sorry I have not updated my blog for ages.

I have been doing well on my immunoglobulin treatment, no side effects other than tiredness for a day and a major headache for a day each time. Theres not much to report where my blood test results are concerned, they are fairly stable but are creeping up very gradually. I took a course of preventetive medication to stop my shingles/herpes virus recurring, it worked for a time but this week I have ended up with another outbreak, so I am back on 800mg of Aciclovir 5 times a day. I am going to be taking Aciclovir for life now to prevent the Herpes virus recurring, I am going to be prescribed 200mg 3 times a day for life !!! I have been suffering rib pain for over a week now, my GP said my chest sounds clear but it could be slight pleurisy so he has prescribed me antibiotics just in case. The rib pain has not improved and I am now worried that my smoldering multiple myeloma may have progressed to full blown multiple myeloma. I have been having a lot of leg pain and lower pain lately too. I phoned the Macmillan unit, where I go each month for my treatment and told them about my rib pain and herpes outbreak and they want to see me next week on 24th Sep 2008 to run extra tests, I am due for my next immunoglobulin treatment on 1st Oct 2008. I think my Haematologist will order another bone marrow biopsy to see what is going on and probably a chest x-ray as well as the usual blood and urine tests. I will try and remember to update this blog with the results and outcome of my appointment.

I have written an e-mail to the Cancerbackup Nurses which have now joined forces with Macmillan Cancer Care, I have asked for some advice from them as they are brilliant at helping answer questions and giving support. I will update my blog if I get any info which is interesting.

Be in touch soon :-) xxxxx