I am seeking experiences of PVC chemotherapy in older people (I am 64). My choice is between PCV versus Temodal or temozolomide (TMZ) which easier to tolerate. I have an oligodendrogloma which has converted to grade 3. The standard of care is 28 days radiotherapy followed by 6 rounds of PVC. I am advised to replace the course of PVC with a course of Temodal. I got through the 28days of RT with no side effects. While Temodal is a lot better tolerated than PVC for chemo medical experience with oligos indicates PVC would give longer overall survival. Few people seem to tolerate more than a few rounds of PCV because its suppresses bonemarrow. This is a difficult choice and I am wondering which to chose because there seems little information on personal PCV experiences. Personal experience or advice appreciated from individuals old and young.
I am 65 and just completed 6 rounds of PCV therapy after 33 of radiothereapy. Genetically I was reasonably well predisposed to benefit from this treatment. My chromosomes had the 1p/19q co-deletion, I am MGMT promotor methylated, I have IDH2 mutation. Your husband may have similar genetics if radio + PCV has been recommended by your consultant. This was the standard of care, and there is good randomized controlled trial (RCT) evidence for this treatment (from a European multicentre trial).
Last Christmas when I had completed the radiotherapy and was about to start PCV, my consultants suddenly proposed TMZ (temozolomide) instead. Taken aback, I delayed treatment and did a 2 weeks review of the literature on Phase II oligos and Phase III Anaplastic oligodendroglioma (which I am) to see whether it was in my best interests to take TMZ. I concluded that while the RCT evidence for RT + PCV was excellent, the RCT evidence for RT + TMZ was not there or the trial had not reported or was not published. Perhaps it has not published – I have not looked it up. After a lot of agonising I opted for RT+PCV, the then standard of care. I have now completed the 6 rounds and am pleased to report that the malignant growth has stopped (not evident in the MRI scans).
I am not qualified to advise. Clinical judgement is one thing and hard, published scientific evidence is another thing. It is hard to get the number of cases to do large scale RCT. We are lucky in that respect.
If your husband was put on this treatment he may have a similar profile to mine: survival rates are good. If you are your husband are scientfically minded, there are a couple of good papers on the subject
I didn’t tolerate the 1st round very well and I was advised to take ¾ dose per round which I agreed to in rounds 3-5. On the 6th round I went down to ½ dose. I tolerated the ¾ dose better than the full dose. It was not an easy road but the end justifies the means, and I am happy I took this decision. Probably the hardest decision I ever took was to go against expert advice. Of course, after the 2nd round the Covid pandemic struck and I had to self-isolate, on my own, 100 miles away from family and any risk of Covid (my wife is a teacher and daughter a shop assistant). So this is another concern for you. Again, the outcome justifies the means, and I have managed to stay Covid-free. Whichever you decide, it is not easy, but it can be done if you set your minds to it. The published data on RT + TMZ may now be published – But I suspect they are still recruiting patients. Ask your consultant.
The 2 references recommended are:
Cairncross G, Wang M, et al. Phase III trial of chemoradiotherapy for anaplastic oligodendroglioma: long-term results of RTOG 9402. J. Clin. Oncol. 31(3), 337–343 (2013).
van den Bent MJ, et al. Adjuvant procarbazine, lomustine, and vincristine chemotherapy in newly diagnosed anaplastic oligodendroglioma: long-term follow-up of EORTC brain tumorgroup study 26951. J. Clin. Oncol. 31, 344–350 (2013).
Mark
Morning Mark
Thank you for such a clear and concise reply. I really appreciate it.
So his tumour is 'Grade 3 anaplastic oligodendroglioma which is IDH mutant and 1p/19q codeleted.' There is no mention of the word methylated. His Oncologists didn't mention TMZ at all to us. After the surgery, it was all about the radiotherapy and PCV.
They have said that the diffusion is widespread and on a very sensitive part of his brain. I haven't asked much about it because my husband is very emotional and would not be able to cope if they said something that would put the fear of God in him. Right now, he is positive and I don't want to unsteady him from that attitude.
He seems to be tolerating his 1st cycle pretty well. 2 doses of Procarbazine left to take. His main side effect at the moment is the utter hatred of food smells. Doesn't matter what it is...savoury, sweet, coffee brewing! He literally locks himself up in our bedroom to avoid the kitchen and the rest of the house.. Oh and constipation!
When we saw the oncologist last Monday (on the 1st day of PCV), he reckoned that if my husband is able to tolerate the PCV, he could have a decade or longer ahead of him. Like you, the option to reduce the dosage is there if it becomes too much. Fingers crossed, he'll hang on in there but I appreciate that it gets very rough as the cycles go on and the dosage may have to change.
I'm not scientific at all but I am happy to read any material on the subject so that I/we can be as informed as possible. We are fortunate in that the oncologists are very forthcoming in furnishing with as much information as possible AND they speak plain English. Will send you an email in a few moments.
Best regards
Pip
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