Stuck On The Wheel

When you look at a Hamster spinning on the treadwheel you wonder if it’s too stupid to get off. They seem to exhaust themselves, take a rest on the wheel and then have another go. So it seems like with my treatment. Not that I am too stupid to get off, just that without staying on the chance of recovery is probably zero. So the treatment cycle continues.

In my last blog I talked about how I had just been through an Autologous Stem Cell Transplant. I also mentioned that it was touch and go if they would run with this rather than the more invasive Allogenic Transplant. After twelve months of chemotherapy I just wanted it to be over. The reason the whole thing had been touch and go was that some of my enlarged lymph nodes have proved refractory (resistant) to chemotherapy. This meant that although there had been a reduction in the size of the tumors they were still active, especially the ones on my shoulder. It was hoped that the extra strong dose of BEAM chemotherapy, given prior the transplant would finish off the lymphoma growth’s.

So it was with quite a bit of trepidation as I headed to the appointment with the Haematologist 60 days later for the results of the PET scan, taken a week earlier. Especially since I could feel the lump under my collarbone which in my nervous opinion had grown in size. There was a bit of cat and mouse with the haematologist at the start of the meeting with him wanting to know if I could feel the lumps and me wanting to know the results. In the end I relented first telling him I could feel them. He then confirmed that not only was the original node still there, but it had enlarged and been joined by a couple of new ones. Not the news I was looking for. Especially after how intensive the whole stem cell transplant process is.

The meeting progressed well and we talked around an action plan. Starting with radiotherapy which would take 6 or so weeks of planning and meeting new radiology doctors. Then once the lymph nodes had been shrunk or killed by the radiotherapy. We were to revisit the Allogenic Stem Cell Transplant. All of this would still be subject to review at a team meeting of the heamatology doctors the following day. Then my doctor would call me and let me know if the plan of action was confirmed or not. Of course that meeting was held on a Friday and no phone call was received. After a rather long weekend he called me Monday morning with the news.

The other doctors had decided it wouldn’t be prudent to wait six weeks for radiotherapy to start, given the rapid growth rate of the nodes. PET scans measure the metabolic activity of cancer by something called an SUV reading. Anything above 2.5 is considered suspicious and most likely cancerous. The first one of these scans I had back in September showed a value of 9.9 for the lymph node in my shoulder. This had reduced to 7.7 in the November scan but had increased to 21.7 in my latest results. An obvious and significant increase. With this in mind the team of doctors decided that I should start a new round of chemotherapy, my fourth in the last year. Although they hope that it will work I think it’s more about containing the growth and maybe achieving a partial result before radiotherapy. There is also an enlarged node within my chest that will apparently be difficult to reach with radiotherapy. So I think, they hope the chemo will deal to that spot.

On a positive note some of the areas of node activity within my chest had retreated to background levels. So the earlier chemo treatments had successfully worked with some of my enlarged nodes. An interesting fact is that the scar tissue left behind by this still reads that the nodes are roughly the same size. So if I had just had a CT scan it would be hard to know what was cancerous and what wasn’t. The wonders of modern technology. Quite why some areas of my body are refractory to chemo and others aren’t is just a mystery for medical science.

So, on Thursday I presented myself back at heamatology day stay for the latest cocktail. GDP which would be administered on a 21 day cycle. With day one and day eight as the infusion days. Having had chemo for the last year my veins do a great job of hide and seek from the nurses. So I was rather worried about how many attempts would be required to place a lure into my arm. One heat pack and one attempt later, success. I don’t think either of us could believe it as I am well known by the nurses as a patient with very difficult veins.

As I mentioned I have been through four lots of chemo in the last 12 months R-Benda, ICE, BEAM and now GDP. That’s on top of going through R-CHOP when I was first diagnosed in 2016. Quite the range of acronyms. Like ICE, GDP contains platinum and as such high levels of fluids are given with the infusion. You then have to pass a minimum of 350mls of urine before they will proceed. Given that I had a few cups of coffee beforehand and then one and a half litres of fluid by infusion, there wasn’t much chance I would fail that threshold.

Since I had only been told about this round of chemo. I thought I would check with the nurse what appointments had been made for me into the following weeks. I really wanted to know how many rounds I would be having. It turned out that no appointments had been made beyond the eighth day infusion. An email to the nurse specialist has resolved that with a plan of action. Sadly a couple of times I have had to chase down the hospital to keep things on track. Obviously it’s very important to maintain a handle on your own health.

Which brings me back to the Hamster wheel. You meet all sorts of other patients when you are in having treatment some just starting out, others who might be considered more experienced with how things work. But for all of us we step onto that treadmill hoping that we only need to drive it for the minimum number of cycles before being able to step off again. Sadly for me it would appear that after having spun the wheel for all of 2020 I am now faced with the prospect of spinning it for most or if not all of 2021, given the recovery period from the Allogenic Transplant.

One thing about being stuck on the wheel is that I have become motivated to try and get myself a little fitter. Something of challenge since I only have half a left hand lung, caused by a biopsy that damaged my phrenic nerve. However, Sarah and I have been out walking and biking taking advantage of Auckland’s summer. I am never going to set the land speed record but it’s great to get out and enjoy some of the many parks around Auckland. Although I must say getting up the tallest volcanic cone in Auckland did present something of a challenge.

Because my bone marrow is still weakened from the stem cell transplant in November getting away in our motorhome is not really practical, as they expect I will have issues with my red, white and plasma cell counts. Once I know more about what’s happing with the radiotherapy and ongoing treatment I will update the blog with another post. In the meantime lets keep that treadmill going.

If you are interested in checking out my motorhome travel blog click on the link here to visit or on Facebook @licencedtoretire I have also set up a Facebook page for my lymphoma journey @Alymphomajourney Feel free to follow me at either page or subscribe to this blog.

Published by licencedtoretire

Retired, or at least for now

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