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zac495

Moderator
Hi Frank,
It is so terribly unfair to add the insult of job woes to injury of cancer.
I was "lucky," in that as a teacher, my job was held. No promotions as a teacher (that's bad, but I didn't miss one). However, I did lose half year salary (medical leave paid the other half). I mean that's a lot of money - but it is what it is. I was 53 and back at 54.

Now I'm 60. My interest in retirement at 62 has a lot to do with my desire to enjoy my golden years. YET - I love my job when I'm not completely exhausted. And is that exhaustion just because I'm 60 or did all transplant slow me down some? Who knows?

For you - wait a few months because you WILL feel better - much better - but fully? Well who knows. You'll know.

Hugs and Love,
Ellen
 

andym

Super Moderator
Those career and life choices are really hard. I've made some optimistic choices and so far that has worked out well even when it seemed scary at the time. But I have a secure job and a very supportive work community and so I know that it isn't the same for everyone.
 

earthling

New member
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.
I agree with everything you wrote. I sort of practiced a little bit of the good old theory of mind to try to get an idea of their plans and make sense of it all :) I believe what they're thinking is that according to the staging - the short treatment should be enough; but if my DH was dealt with a really bad set of cards on the genetic lottery, that relapse would occur anyway, and that they were sparing him for the next stage of the battle.

I don't necessarily agree with them, and would feel a lot more secure it the standard treatment was initiated - especially since it has shown good results in the recent papers, as you said. But it is what it is. What annoys me the most is the fact that they could just "arbitrarily" change plans in the midst of therapy with no solid proof for the case. If we had known that, we would probably go looking for a second opinion in the very beginning.


As for you - so glad your doc is happy and that things are going smoothly. You mentioned running out of standard treatments if this one fails (I certainly hope it won't) - but isn't an allo transplant eligible as the third line of treatment? And I surely wish that CAR-T or a similar treatment will become "standard" in the next few years. Can you all imagine that it was only two years ago that Yescarta was approved by the FDA...

As for your dilemmas about the future - I believe that is a highly individual question about what you should pursue. It hugely depends on your personality. For some people, trying to advance a career is a good distraction from the anxiety related to the disease. For others, it adds to the anxiety. But if your gut feeling tells you to slow down and invest more time in your family - do that.

I know it's much easier said than done, but we should try not to make our decisions based on fear, for example, the fear of missing out, but try to pursue what makes us deeply satisfied. We don't know when our time will be over regardless of any disease - any of us can go at any time, it's just the probability that changes. I know that "live each day as if it was your last" is a shabby saying, but it does make sense.

But, as most of the peers here have said - resting is and getting well should be a priority now. I hope that the dopamine from the exercise regimen will kick in and lessen your worries!
Oh, and mindfulness is a great technique for calming a restless mind, IMHO.

Take care, fingers crossed!
 

dn_swe

New member
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.


It's a good sign that doc is happy [emoji2]

Regarding your career choices, I guess that depends on how you see your job, and what's important in your life.

If you love your job and pursuing new challenges, and you feel like doing that when you have given yourself some more time to recover - go for it!

But if you are doing it mainly for the money I'd think twice unless you really need the money. I mean more money is always nice, but a higher pay usually means more responsabilities, and learning new stuff, coming to a new workplace etc can be pretty exhausting.

Having a balance between work and your personal life is important to feel good, and for me the balance point varies depending on what is going on in my life.

That's my 2 cents :)

/Daniel, also working in IT. (Ancient stuff though, mainframes)
 

frankhond

Member
Well it’s been a while, better post an update. Had my 3 month appointment with the doctor a couple days ago.

Blood good except for B cells, which are a bit low. Probably late ritux reaction, also doc says it’s common after the treatments I had. It should normalize at some point... or not. My wife and daughter had a bunch of flu like things, one of which included loss of taste and smell, breathing difficulties... but all I really had since the sct was sore throat for half a day, a runny nose another half and tiredness a day or two. Immune system can’t be too bad.

Worked 25%, then 50%, going up to 100% in two weeks. We were one of the first companies in Sweden, along with Ericsson and Spotify, to close office and have everyone work from home. It turns out have a very hard chair at the dinner table...

Gym 2-3 times a week - the hospital has a special gym for sensitive cancer patients at 30mins distance by bike. I hold my breath for 2-3 meters every time I pass someone.

@Daniel Thanks for your comments. Thing with IT is that after a while, to advance, you need to go into leadership or become an independent consultant. I’m in a spot where I can go for team lead, lead engineer etc. But right now, coding gives that solitary sense of calm and flow. Can I lead a team without having a nervous breakdown? Of course, I would have said a year ago... now I really
don’t know.
 

po18guy

Active member
Good! Actually, your family's symptoms sound an awful lot like CoViD-19, with the taste/smell loss. Have they been tested?

B cell depletion can go on for some time. I received only two infusions of Arzerra (Ofatumumab) and remain B cell depleted 3 years later.
 

frankhond

Member
Nobody has been tested... this was in February/March when they only tested people returning from ski trips in Italy. We are waiting for proper antibody tests, there might be a good one available to the public sometime during the summer. But yeah, symptoms sure match...

On a sadder note, my father in law came down with covid (much later, probably got it from mother in law who caught it at an ER visit) and spent two brutal sessions in respirator. He woke up for the second time a few days ago and is very weak and mentally confused.

This is so random, he is 66 and in good health, maybe a little overweight, and of course male which seems to be an important risk factor.
 

andym

Super Moderator
Overall, it sounds like you are doing well with some of the usual stuff we go through while recovering from treatment. It's not easy but one step at a time and there seems to be progress. I am very impressed that your hospital provides a gym for cancer patients. That is so great, especially at this time. I'm not sure when I will be ready to go back to the larger health club we belong to. I might retreat to our home gym and improve that along with playing squash at a small club.

I hope your father continues to recover. It is a brutal disease.

BTW, at the end of January my wife had close contact with a colleague from Seattle who was sick and was later told it was a presumed case of COVID-19. I was sick most of February and the first half of March including shortness of breath. Only sheltering-in-place got me healthy. I recently had an antibody test from Stanford (their own lab test) and it was negative. I guess it was something else or a combination of other things.
 

frankhond

Member
Ok, father in law was able to speak a little on the phone, although he is too weak to actually hold the phone and only has energy to enunciate a bare minimum. But it’s promising.

@Andy the gym is the only thing keeping me sane right now... home gym is highly recommended if you have the space. One of those multi cable things and some weights, and it’s possible to accomplish wonders.

I’m in an apartment, no space, luckily there is the possibility at the hospital. They offer it because there is mounting evidence of the benefits for cancer patients.
 

po18guy

Active member
Do you bicycle? Seems that it would be another way of keeping heart, lungs and muscles (if not your mind) fit.
 

andym

Super Moderator
Much of my resistance training at home is done with a TRX which uses body weight. It is much cheaper and more compact than a cable machine, although those also have their advantages. www.trxtraining.com There is also advice online about making your own from some webbing straps and pvc pipe at much lower price.

I’m glad that your father-in-law is making some progress.
 

frankhond

Member
I got a trx when I started the Pre-sct chemo. Better than nothing but not as good as some other things. And I bike to the hospital gym, half hour each way. And try to walk 10km each non-gym day. As long as weather is ok.
 

andym

Super Moderator
Building the biking into your gym days is great. I definitely agree that the best is a setup with multiple choices: free weights, cable machines, and trx. It is currently impossible to buy dumbbells but we have a few. I also bought some elastic cables to use instead of a cable machine with weights. Now I need to mount the stall bars I bought because they will be great to use with the elastic cables by allowing to attach them at multiple heights. Of course, that would be hard in an apartment where you can’t drill into the walls.
 

frankhond

Member
Impossible to buy dumbbells? Ha, is that the new toilet paper?

Started working (from home) full time today, wife conveniently decided that since almost nobody works in her office right now, she might as well...
 
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