I have eczema, which is different than chemo rash, but wool makes inflamed skin itch iike crazy, so avoid that and try to wear all-cotton hats and clothing. Hope it goes away soon -One snag is an ugly rash, it appeared day 1 on upper back, shoulders and back of head. Looking on the web it seems to be “chemo rash”. The back and shoulders are slowly drying out but the stuff on back of head itches and moves around.
ESMO guidelines state "In summary, the recommended treatment for stage I–II PTL consists of R-CHOP21 × 6–8 courses, with the addition of CNS prophylaxis and prophylactic RT to the contralateral testis."Do you know if anti-anemia supplements help with post-SCT anemia and are they allowed at all?
But in general, do you think that additional therapy as far as 6 months from the end of the treatment would make any sense?
Also, I'm bothered by the number of R-CHOP sessions. He was supposed to get 4, but was cut short by the team after 3rd for the reasons still obscure to us…
That's disconcerting...Also, I'm bothered by the number of R-CHOP sessions. He was supposed to get 4, but was cut short by the team after 3rd for the reasons still obscure to us…
I'll try to write about our experience in the next couple of days. Perhaps it will be interesting for the forum to see how DLBCL is handled in the less affluent parts of Europe (spoiler: it's pretty much the same, but sort of on a budget with more of a "let's-just-hope-for the-best" attitude).
Actually, FLYER trial produced some promising results in younger patients with limited-stage disease. And it included at least some patients with PTL. Here's the link:I know of some trials where the number of RCHOP treatments are reduced for limited disease, but any potentially beneficial results (if any) have not yet made it into the guidelines.
That's the problem. DH was treated in the main lymphoma center in the country (...of Serbia, forgot to mention that), by our top hematologists. Like in Sweden, they have a team-based approach only, so the doctor that we first approached (the one that went for four sessions and who was recommended to us by everyone) doesn't necessarily get to have the last word about the protocol. What he basically explained when dh went in to ask more questions is that it was an "arbitrary decision" (but that he wasn't the one who made it), and that in this case, with IPI score 0 and a disease that looked completely localized, 3 or 4 made no difference. DH tried to push for four, but he was like. "No, no, there's absolutely no need for it". While doing research, I got the impression that it can make ALL the difference, but again, I obviously don't have any clinical experience, and this team should plenty. But then again, they can't have THAT much experience with PTL since it's so rare... Told you, a pain to think about all of this.I don't know what country you are in and what possibilities you have available, but if possible, try to get a second opinion at a major research hospital with lymphoma expertise. And ask all these questions.
Eww, blood pudding I've tried to stuff myself with beet (eeww to some too, I know!) and it made only a slight difference, but what really pulled me out of anemia were Feroglobin capsules. Now I don't know if that's applicable at all, but if supplements can help, that one is really good.I asked my nurses about anemia but they said there is no point in eating blood pudding and other such remedies... "that's for more or less healthy people". I'll ask my hematologist about it the 16th.
Yes but there are plenty of patients where non-PTL DLBCL got 8 RCHOP treatments and relapsed too, so that reasoning is flawed. PTL literature seems split between very pessimistic studies of past cases, newer papers pointing out that older studies contain lots of patients who received nonstandard treatment, and newer papers that claim success rates up to the 80% ranges with standard treatment. Truth is nobody knows much about the specifics of DLBCL and the genetics and mechanisms behind it. It could make sense to treat less, which gets the easy cases and doesn't damage patients whose cancer is more difficult. I personally think that there are guidelines and if a doctor chooses to act differently, this should be documented (possibly as a trial) and explained/motivated properly, especially to the patient. Hope your husband has an easy case and that his short treatment will be the last of it.One of my theories about the treatment here is that the doctor secretly believes that PTL acts rather randomly (or so it seems now when we still lack a large body of data). They have had some patient with PTL stage II (I think) who was treated with 8 r-chop sessions, went into full remission and still relapsed, against obvious odds. "PTL works in mysterious ways", it seems (sorry for the bouts of dark humor)