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!

This entry was posted in * Myeloma and tagged , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

5 Responses to Six months on

  1. I am a 48 year old female and have myeloma too. i just finished an autologous transplant. is the allogeneic transplant a cure? how do they compare as far as how you feel going through it? the autologous transplant was the worst thing i’ve ever been through. i was so sick for so long.


    • Jet Black says:

      Hi there!
      Great name… very apt!
      Yes, going through the auto transplant was totally horrid and the worst thing I’ve ever been through too. I wrote about it in this blog if you want to know more (Aug 2011). The allo is very different; it’s a longer recovery, but less horrid. I had the allo transplant because I relapsed quite quickly after achieving complete remission post-auto transplant (Jan 2012), so I had to start treatment again. It’s all here, if you want to read about it. But no, the allo isn’t a cure, it was just the next treatment option for me. So far, there isn’t a ‘cure’, just ongoing management.
      Where are you being treated? I hope it’s going well and you’re pleased with your medical team. Best wishes for a long remission.


  2. Jet, I am so happy to hear of your good progress. Keep up the good work, girl!
    Carole Leigh


  3. pauline says:

    nice one Jet


  4. Mavis says:

    Hi Jet

    So glad things are going in the right dirrection. Why is it that the non myeloma things, like your mouth problems can cause so much suffering and reduce the quality of life?

    I valued you piece on the end of life. It has helped my own thinking.

    Lots of love.

    Mavis xxx


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s