The next stage… maintenance

I was at the clinic again on Monday (24/10) and happy to see Dr Jenny Byrne rather than the Prof. Now I’m three months post-transplant, it’s time to start the maintenance medication, so I collected the first of what will now be my daily regime of Revlimid. In fact three weeks of taking it daily, followed by one week off, as in the initial treatment.

However, whereas the initial treatment was only for 4-6 cycles (in my case only four), this will be forever, or until there is a relapse. I am stressing the ‘forever’ aspect as I am nervous about the effects I might experience on Revlimid again. During the initial treatment, my taste, and therefore my appetite, was badly affected, I felt very sleepy during the day or early evening and I had cramps in my calves, usually in the morning. These latter two effects, I think I can live with, but not the taste loss.

It’s hard to know how much of these effects were caused by the cancer, the hypercalcaemia or the medication I was taking. It’s one thing to have unpleasant effects for a few months, but really not for the rest of my life. Quality of life is paramount; I would rather have a few years of living well, with energy and enjoying food, than an extra 5, 10, 15, even 20 years of just being alive, without being able to enjoy it.

The trial protocol requires a dose of 25mg a day, even though earlier trial/use at this stage which has been shown to be effective, was at a lower dose. Dr Byrne wanted to prescribe a lower dose, but explained that she had to stick to the trial protocol. However, she stressed that if I had any ill effects from it, I had to let them know and they would lower the dose immediately quite happily. As we were talking, she reminded herself that although my kidney function has improved since I was first ill, it is still impaired, so she was able to use this as a reason to prescribe a lower dose of 10mg.

We discussed what might happen if I have unpleasant effects and she reassured me that the dose could be lowered to 15mg every other day, or 5mg a day, so two levels of reduction are possible, before giving up on the trial and coming off the medication altogether. And who knows… maybe I won’t have any bad effects. We shall see quite soon, I expect… I took the first tablet that night!

I also had a chat with one of the nurse specialists, also called Jenny, about the possibility of getting some counselling, as I want to talk through the emotional, psychological and social issues that I am now experiencing. She mentioned the new Maggie’s centre which is on the hospital site and about to open next week.

Maggie’s Cancer Caring Centres is a charity whose aim is “about empowering people to live with, through and beyond cancer by bringing together professional help, communities of support and building design to create exceptional centres for cancer care.”

While I was waiting for my prescription, I took a walk to the new building, which as you can see, is very eye-catching and as I discovered, equally modern and trendy inside. Although it’s not yet open, I met Mandy, a clinical psychologist who will be working there once it’s open, but that day she was sorting out new furniture for the building.

Despite the centre not being open for business, she was very welcoming and explained how the place works and what sorts of activities and facilities are on offer, including free counselling. She invited me to attend the community opening on Wed 2 Nov. I’m going to go… and promise to report back!

Meanwhile, now that my taste has returned, and therefore my appetite, I am enjoying eating and slowly putting on weight. I weighed myself this morning and have now reached an amazing 56kg! I have also started juicing again, with the sooper-dooper juicer generously given to me by my cousin and his wife. Firm favourites are apples, carrots, garlic and ginger, mixed with a variety of other vegetables and sometimes herbs/salad leaves – as much of it organic as possible. Yummy!!

My hair continues to sprout, attracting many comments about how quickly it’s growing, how good I look and for those who dare to feel it, how luxuriously soft it is. It’s a great boost to hear such compliments, but at the same time they make me feel a bit uncomfortable, as they don’t take into account how I feel emotionally. Of course, I don’t want to share those feelings with everyone, but I often feel that once people have noticed how well I look, they’re satisfied that I’m ‘back to normal’ or something like it, when in fact, I feel so very different and can’t even explain it fully to myself, let alone other people.

A friend sent me this article: After treatment finishes… which highlights some of the issues, but didn’t go far enough for me. Also, it focuses on people whose treatment is finished, implying that they’re cured, which isn’t the case for me and other myeloma patients. I’m hoping I can get more personal help to comprehend and manage my feelings from a counsellor familiar with such issues. Let’s see what happens at the Maggie’s Centre… later today!

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3 Responses to The next stage… maintenance

  1. thanks for the update Jet, here’s hoping the drugs don’t ruin you appetite, or anything horrid!


  2. Snip says:

    I’m curious as to why you are going on Rev… did you not get a good response from the transplant? My curiosity is largely self-serving, as I had my transplant 6 weeks ago tomorrow, and am going to be tested at the 100-day mark (mid-December)… I am hoping and praying for a CR result, which my Onc agrees means no maintenance therapy. With a VG response, we will have to weigh the decision (I don’t want to do any more drugs)

    Good luck with your side-effects, girl!


    • John, I am on a clinical trial, which has three points of randomisation:
      – Initial treatment, randomisation between Revlimid and Thalidomide, to see if Revlimid is more effective than Thalidomide at initial treatment stage.
      – After 4-6 cycles, if only partial or no response, randomisation between Velcade or straight to SCT.
      – After SCT, randomisation between no maintenance and Revlimid, to see if Revlimid is effective in making the remission last longer than without medication.

      I was initially randomised for Revlimid, then as I had a complete response, I didn’t need the second randomisation; and now I’ve been randomised for Revlimid as maintenance medication.

      Good luck with getting a complete remission!


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