24 June 2015 – The Upshot at the Second Relapse (Cancer and Me 34)
I eventually got to see my haematology doctor last Friday (19 June), and had a good hour with him asking questions. It was finally a relief to be able to get some quality time with him, rather than squeezing in phone calls and rushed messages. It was still a little perturbing that my questions prompted some on-the-spot thinking that I thought would have already been done, but overall I came out with more confidence that we would reach the right conclusion soon.
It clearly wasn’t satisfactory that the initial thoughts on the biopsy were shared with such confidence as to set actions in motion that turned out to be unnecessary. At the hospital end, they’d held off organising preparations for the start of chemo, because they wanted to get the final biopsy result. But at my end I was panicked by thinking that I had 4 working days to get work handed over before being housebound. The “90% certain” biopsy assessment, it turns out, was on the basis of having a brief look under the microscope and agreeing that the blood looked like it was behaving like high-grade lymphoma.
However, the antibody ‘staining’ tests had not been done at that point, and they conclusively showed that the lymphoma is low-grade. I even got a print out of the report to prove it. And my blood tests were all normal, which is another indication it’s not high-grade.
The thinking for treatment was that it was best to ‘watch and wait’ (which I’m told nowadays is called ‘active monitoring’). However, I had two questions:
- Why ‘watch and wait’ this time when I feel it, when they treated it last time when I didn’t feel it (apart from a little bit before it was diagnosed)? It turned out, when I prompted him to compare the CT scan pictures with those from 3 years ago, that last time the lymphoma was in several different places, whereas this time it’s only appeared in the groin. Having said that, the fact that one gland at least is visible and has more than tripled in size in the last month, is a little concerning, and was noted.
- What are they ‘watching and waiting’ for? He kept saying I was asymptomatic. And when I asked whether the visible and uncomfortable lumps in my groin were counted as symptoms, he said no. When they look for symptoms they are looking for night sweats (which I’ve never had), unexplained weight loss, itchiness, rapid progression in some glands, worsening tiredness and exhaustion, blood test results (LDH being one of them). On most of these counts I am not showing symptoms.
The other thing that bothered me was given I now know that it is definitely back, and I can see it and feel it, how much longer will it be before it does get to the stage of needing treatment? How can I put myself forward into a new contract assignment (presuming the current one is still open to me and assuming it comes to an end within the next 6 months as planned) if there is a chance that I’ll need to give up on it within a month or two?
That’s when the possibility of radiotherapy was suggested, and the suggestion was on the basis of seeing the CT scan showing the lymphoma in one area (and it had been my suggestion to have a look at the CT scan!). That would focus on the groin, and presumably would reduce the swelling there and give me a bit of respite before the relapse spreads to other areas and needs treatment. If it gives me an extra 12 or 18 months that will be good as far as I’m concerned.
I completely understand why they don’t want to rush to give more chemo where that’s not immediately necessary. I’m still relatively young (only 45) for a lymphoma sufferer, and chemo is less effective every time you have it. So ideally you want as much time as possible in between rounds of chemo. And it’s worth remembering that research has shown that there is no discernable difference in response between those who are treated with chemo immediately and those who wait for a few months or even years. It was also slightly comforting to hear that, with follicular lymphoma, just because it’s progressed to this stage in two-and-a-half years doesn’t mean it will progress at the same rate in the next few months and years. So it’s quite common to ‘watch and wait’ when glands are visibly swollen, and common for glands to go up and down while in that ‘active monitoring’ phase.
So following all that discussion my doctor had to go back to the MDT meeting on Tuesday (yesterday) and make a case for what to do. I met him again today to find out what had finally been agreed.
And in the meantime, having worked at home every day whilst being in limbo, I took Friday, Monday and Tuesday off work to properly rest, try to recover from the emotional exhaustion and regain my sense of perspective. And then I went into the office to see my boss/client this afternoon to see where we go from here on that front.
So what is the upshot?
The upshot is that you can forget everything I’ve just written. There’s another change of thinking!
The doctor told me that my case was discussed in depth at the MDT yesterday, and that the lymphoma specialists from Southampton were involved, and that, considering the large size of the lymphedema deeper inside my pelvis/abdomen, they had decided that ‘no treatment’ was not an option. They also ruled out radiotherapy because the area in question is too big to be viable. Fortunately high dose R-ICE chemo is not considered appropriate either.
The recommendation is for some different chemo – Bendamustine (but no Rituximab this time, because that doesn’t seem to be doing much in my case) followed by an autologous stem cell transplant.
They’re not going to start the chemo until after we’ve been on holiday at the end of July, so we don’t have to worry about what I can or can’t do and we can just enjoy the time away. After having first told the kids that I couldn’t go with them on holiday, and then told them the good news that I could, it was important to Heidi and me that we didn’t have to change the story again!
So chemo is booked to start on 5th August.
I am to have three cycles of treatment, spaced four weeks apart. Each treatment involves infusions of Bendamustine on two consecutive days, taking about an hour each time. Then after the third cycle I’ll have a CT scan to see if I’m sufficiently in remission to go for the stem cell transplant. If not I will have one more cycle of Bendamustine before going on to have the autograft.
The chemotherapy is apparently not so potent as to make office work impossible, as would have been the case with R-ICE or R-DHAP. So I can continue working normally until the stem cell transplant.
And I’ve agreed with my client that I can continue with some work for them, as a supporting ‘Subject Matter Expert’ on the same project, even though they will still bring in a replacement project manager. It makes sense from both sides. Since with any chemo you don’t know how it will affect you, having the greater flexibility and the reduced pressure means if I have to work at home or take time off it will not be a big impact. It’s more certainty and stability for them, and less pressure for me. It’s a win-win, except that they are going to end up paying more money for the new arrangements. There has been some coincidental shuffling of the Finance team that has made this possible, but I must give them credit for being willing to take on slightly more cost in order to keep me with them in some capacity. I know it helps them out, but I also know that they are partly doing what they can to help me as well. (It’s a good company, with refreshingly caring directors. They probably think it’s normal, but having worked in many different places I know that unfortunately it’s remarkable. I’m not even an employee, I’m just a contract consultant, but they still care about me as a person and don’t just see me as a supplier.)
How do I feel about all this? I don’t know. I guess slightly relieved that finally the way forward is decided and the rationale all hangs together. I’m also nervous about the stem cell transplant and the kind of complications that can involve. I’m nervous and wonder about how we’ll manage financially when I’m off work. But I also start to wonder what it will be like after the stem cell transplant. What if it really does cure me? What if this is the last time I have to fight with lymphoma? Can that really be possible? What will it be like to be normal after all this?
One step at a time – Right now I’ve got to think about getting my mind back into work, enjoy our holiday, and then treatment will start. And sometime in the next couple of weeks I have to fit in a bone marrow biopsy (if you’ve read my previous comments about bone marrow biopsies I shouldn’t need to even say how I feel about that!).