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tbear

Member
So, you had a Merry Christmas I hope? Glad to hear it, and now that you're on "the other side" (post A-SCT), live life & please, have a Happy New Years!
 

frankhond

Member
Thank you all! The blood values are climbing slowly but steadily. Still anemic but no longer weak like a shaking dog. Although running up the stairs like that guy Andy described is not gonna happen for some time. I’m starting to suspect he hurt his foot when passing out or something... I’ve started to take walks again, a little longer each time.

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. It seems to be exacerbated after wearing headgear, I have tried different beanies and materials... I have to wear something on my head when going outside, it’s below zero centigrade. Annoying.
 

Step2

Active member
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.
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 -
 

Jackiet

New member
Wishing you a good outcome. It’s hard to not get upset. I’ve been upset since June. Hugs to you. Jackie
 

earthling

New member
Hi frankond,

I have been lurking our first thread was of great help while we were in the middle of the primary battle. Among all the papers and articles I've, reading about real-life experiences with this rare lymphoma from you and tbear was an immense support and sort of a relief. When I had seen that you unfortunately relapsed a couple of days ago, I felt a need to express my support.

I'm so glad that the transplant went well. I don't know why, but I'm sure that this ordeal is truly behind you now. By what you've written, you seem to have a dedicated and knowledgable team of doctors. It's great you've reacted so swiftly to when you first noticed the bump and I believe that further increases your chances of a good outcome. And being fit is also certainly a plus! Although this "accident" that is the relapse is naturally unwanted, as you see, there are many positive details in the picture.

I would suggest that you stick to fitness and music, and also to your counselor.
This can be touchy, I know. It took a while to convince my spouse to see one (Prednisone rage attacks sort of helped push things forward in that direction lol), but it has been a tremendous relief for all of us. He has been prescribed a small dose of Prosac-like SSRI and the side-effects are negligent. And talking also helps.

Wishing you a happy, but an otherwise uneventful :) new year and a speedy recovery. Take it easy and thank you for everything you've written here!
 

srli

New member
Just wanted to say Happy New Year to you Frankhond. The new year always seems like a new start and now that you have completed the transplant I hope that things are looking up for you and recovery goes well. Lots to look forward to in the new year.
 

ER-1

New member
Happy new healthy year Frankhold. I'm quite sure with your attitude you will put all this behind. Cheers for you man.
 

frankhond

Member
Thank you friends for all the encouragement!

Xmas was very nice and quiet, I stayed home and had a really good excuse to skip some mandatory family events... and the Xmas food all tastes like rotten grass with metal on top right now, but certain things still taste normally. So I'm making pizza with prosciutto and smelly cheese for myself. And my wife made a really classy saffron fish soup with a ton of white wine and mussels. That one will be a staple of the household for the foreseeable future.

I'm home working on pushing the daily walk distance, currently up to around 8km. Should be around 14-15km, getting there. It's winter and pretty cold here in Sweden, so I had an exuse to do some online shopping for hi tech winter gear...

Blood is so so... Trombocytes are almost 80% and steadily climbing. But HB is around 60%, climbing very slowly. Leukocytes and Neutrophils are around 50%, these were all normal right after hospital where I got Nivestim, when I got home they dropped to these values and don't move much right now. I get home care and meet mostly nurses right now, they all say I'm doing great, but I'd like to know why blood is still low and when it's expected to normalize. Hopefully there will be some answers at next appointment with my hematologist the 16th.

@earthling sorry your husband is going through this. PTL on google has a strange mix of hopelessness and some newer papers reporting really good results. While these newer texts report 70-80% success, both tbear and myself have the bad luck to fall on the other side of statistics. But tbear is proof that modern technology can treat relapses successfully, and I'm aspiring to the same. Let me say one thing about your husband's treatment. The exact CNS prophylaxis is controversial, but newer papers I read are now leaning towards systemic treatment having a benefit, not only for CNS but also to reduce relapse rates in general. This convinced my doctors to give me both intrathecal and systemic treatment. From your signature
it looks like your husband only got intrathecal MTX. I would recommend to discuss some form of systemic prophylaxis as well. Exactly what kind is also controversial and varies with location, ask what protocol they offer where you are. My best wishes to you both!

@Jackie I have been following your progress and think of you daily. It is so very hard right now to understand how to think about one's future, especially right after a dramatic treatment like an SCT. And allogeneic SCT's are of a different dignity altogether. But it seems the treatment has bombed the crap out of the MDS, and this is a very good thing. Can you spend some time outdoors, in nature? Trees and wind in your face can work wonders for the mind (as long as it's not too cold).

And a happy new year to you all!
 
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earthling

New member
Glad you could enjoy your Christmas Frank! Don't get me wrong, but I had to chuckle at your description of what Christmas food tasted like lol. And in our experience pizza makes sense - my dh was baffled by the fact that while the "real food" mostly tasted like crap, comfort food, junk food, snacks and bakery stuff haven't lost their charm at all while he was "peak chemo".

Seafood soup is an excellent choice imho because of all the healthy fatts. Yoghurt and banana based smoothies with the addition of natural protein powders are a great way to get your nutrition in too. They just slide down your throat, you don't even have to focus on the taste ;)

Do you know if anti-anemia supplements help with post-SCT anemia and are they allowed at all? I struggled with poor hb levels in my pregnancies and found some efficient ways to increase them. Dunno if it would be applicable in your situation...

Thanks for your input about HD MTX. I have come across the same thing, but it wasn't offered to us as an option and I'm unsure if they do it here 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…

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).
 

frankhond

Member
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…
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."

This is consistent with the guidelines for Sweden where I live. 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. I would confront the doctors and demand to know on what evidence exactly do they base the decision to only administer three RCHOP cycles. In fact, on what basis did they only plan four cycles at the start?

As for administering chemo with a six month delay, this is something that need to be deducted from data. The hematologists should know this stuff. 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.

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.
 

zac495

Moderator
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).
That's disconcerting...
 

earthling

New member
I wanted to avoid "hijacking" Frank's topic and tried to write our story to start my own topic with it. However, halfway through it I felt like falling down the rabbit hole again, with the stress related to the "3 sessions" ordeal coming back. And it was becoming to be a long-read lol. So that will have to wait a while. I'll try to reply just briefly here.

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.
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:
https://www.mdedge.com/hematology-o...as/flyer-four-cycles-r-chop-good-six-low-risk

That's why we were happy when we heard the number four. Not only because it was easier to accept the idea of fewer chemo sessions with excellent results, but it also signaled that the doctor we came to contact with first was on top of the game, so to say.
Still, I'm aware that 3 doesn't equal 4, and we asked - additional Rituximab sessions are simply not done here. In the end, what we hoped for wasn't what dh received.

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.
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.

So, getting a second opinion would mean going abroad, and that option was out of the question at that particular moment. I don't know if it would be of any use now. I actually wanted to reach out to a doctor abroad a couple of months ago, but it seems that everyone but me (including the patient himself) was against it.

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.
Eww, blood pudding :D 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.
 

frankhond

Member
Thanks for posting the FLYER link, I haven’t seen that one. It’s hard to say what works and what doesn’t, especially with PTL as an extra complication. In my case I got the complete works with all the topping, and still relapsed, in a very nonstandard way too. OTOH I got only two R-DHAO cycles before the sct, that too was a decision by the team... I guess at some point we have to trust the docs, or go hunting for second opinions if we can.
 

earthling

New member
NP about the study. It was one of the first things I came across while researching because it was fresh news then, and it had filled me with hope. Still, I would appreciate if the team hadn't played with that hope by cutting that one chemo :/

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)

For now, we stick with them. I realized that I'd be doing more damage to the patient here by undermining his trust in his doctor, so I have tried to embrace his trust as well.

I reviewed the thread before posting and realized that your appointment is tomorrow. Fingers crossed for the best results!
 

frankhond

Member
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)
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.

Me, I'm done with all chemo, blood is pretty good, doc is happy. There is some rads left to the spot where the relapse happened. It's completely resected so they will zap an area around it, just in case. Starting in a couple weeks.

The struggle now is to find a model for thinking about the future. Right now I'm having a hard time, kind of mutely going through the motions of reassembling some normalcy and thinking ahead to phase in work again. But what about longer plans? There were two heavy career interruptions already. Will there be more of these (a bad situation if that happens because we are out of standard treatments)? Of course nobody can tell. I'm almost 50, by this time I should be a successful iT consultant, but the cancer but a fat brake on that. Does it make sense to push towards more advanced tasks with higher pay in this fast moving business? Should I settle at a slow, secure place instead, focusing on spending time with my daughter? People are telling me that it's too early to think about that stuff, just recuperate first and then we'll see. Jeez. At the end of January I'm scheduled to start some strength training at the hospital physiotherapy center, boy do I need it.
 
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Sue B

Active member
As someone who has been through the Auto SCT I think give yourself a few months to recover your energy and the emotional toll treatment can have and then you can re think your career goals.
 

barbierunr

New member
Hi, Frank. So glad that you’re well enough to start thinking about your future life. I went through two job losses due to recurrence. And subsequent bad reactions to treatments, etc. I was in my mid fifties when the first job loss occurred, which put me into a tailspin. I took my time, recovering and reevaluating my career choices. I ended up taking a big step back to a far less stressful job, in a non profit that made me feel good. I am fortunate that my situation made this possible financially. Eventually, I had another recurrence, and the subsequent treatment I received was toxic to my body, and it snowballed to another job loss. However, the non profit was kind, and has been paying my disability for three years. Point is, if you have a choice to lower your financial expectations and workload (ie, no working past normal working hours), then consider it. Cancer really screwed up our lives. If you can make the most of the rest of it, go for it!
 

ER-1

New member
I'm glad you are already done with treatment (left some rads for later, but that doesn't hurt much).

Your argument about future, work, hit me because I already lost a promotion last year, which I needed so bad for financial reasons. I was about to be promoted chief of office in a nice sector. Well I didn't because I went to Italy for many months, someone else got it, and now I'm stuck as specialist job description, which for me it's really not much since I've also done pHD. I feel very insecure about my future but if I haven't relapsed already, I am still seeking to be promoted (but no sign for it to happen quickly, unless 5 people in my building job die instantly from natural causes).

My suggestion: we are already very insecure about our health, future, and in my case financial well-being. we might relapse soon and die soon after. We can't do anything about it.
So, go for it. We have nothing to lose. Give your all to be promoted, to do an active life, to take responsibilities.

Of course, easier said than done. Myself I'm doing completely the opposite of what I just wrote.
 
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