Late Effects of R-CHOP

Hi Dawn and it is good to hear from you and to get an update on Terry. I do miss your 'long' posts and often what was going on over the time you have been off line.

So 'late effects' this indeed is a real thing and can come along out of the blue, but at the same time this could well be a totally unrelated -run of the mill health condition.

I am now over 4 years post my last main treatments and even a few weeks back my legs were so sore and heavy........ was it I had been more active and my body was fighting back? most likely......... but I could have went down the rabbit trail of 'what if?'......... but it all came well. I think I have developed a mind set that can distinguish the bad from the really really bad.

See the Oncologist and get their take on this and work to find the answers.

Treatments like R-CHOP can have a long-lasting effect on the body and for some, health issues keep coming out of the woodwork way down the line and yes, for some, this can lead to other cancers.

Due to all the treatments I have had over the years I have been warned that I am way up the percentage risk of developing skin cancer........ but if it shows its head we will chop it off.

Looking for this to be fuss about nothing.

((hugs)) all round.

So glad you read my "Nervous Nellie" post Highlander.  I probably waited too long to offer more than another worry wart message.  We knew there would be worries / anxiety following Terry's treatment but I don't think they did as good a job of explaining all of the possibilities there are that come with life after chemo . . . at least over here in the States.  We plan on asking for something more when we go in on Thursday. 

There was, clearly, no other option than to go ahead with the RCHOP.  That is for certain.  The alternative wasn't even an alternative.  I just wish we could have been given better consideration when we called with this latest issue.  It was almost as if we were being forced to start from scratch with the very department of Internal Medicine that (for years) has underestimated and misdiagnosed my Terry too many times and nearly caused his death over and over.  Of course, none of their records reflect all the begging, hooting and hollering I did to get him adequate care.  So, to just try and pass us off to them again, didn't sit right with us.  It's only been a year since defeating the two-headed beast . . . So, yeah . . . we have some things to discuss with his oncologist and at least chart a course for what's down the road for us. 

It's so had to watch Terry deal with yet another "thing" . . . limping away to work every morning, not knowing what/if anything can be done to ease the pain and the inconvenience.  We'll figure it out, I'm sure . . . just getting from here to there is the challenge. 

Will be sure to keep you posted on what we find out. 

Will try and write more again soon.

Me

Update from our oncology appointment today . . . for anyone who may have interest

Learn2Live

Hi again Dawn, progress then. Take all the help that is available to unpack the rucksack of stuff that you both have collected over the years......... a chance to empty it all out and pick up the things that matter and bin the ones that have been crowding your lives.

Pleased that the Doctor was on the ball and is taking this in a positive direction. Bone density an be a post treatment issue so worth getting it all checked out.

All pleased that the Doctor recognised the rough journey you have had and the need for staff to step up to the mark.

Keep us posted ((hugs))

Thank you, my friend.  That means so much more than you realize.  

The support and all the friendship I've discovered through this site has been my "rescue".  It's been what's held me together through this last year or so.  Unfortunately, I wasn't able to find that in anyone else, believe it or not, through these many years of challenging, sad experiences surrounding my Terry's serious health issues, so it means the world to me.  This cancer journey, especially, as I told the doctor yesterday . . . has just pushed me to the limit.  So grateful she seems to understand; although the whole story has yet to be shared with her in the right way . . . she's just so busy.  Good doctors always are, aren't they?

Hopefully, the counseling she offered us will help clarify things and be passed along to her.  

Will be calling to schedule the bone density test when I get to work today, as well as the counseling we need.  

Will be sure to keep you posted once we know more.

Thank you so much for everything!

Hey! I remember your posts! And was going through R CHOP myself! I just posted an update today exactly 1 year after totally finishing chemo!  I can't help with your current issue but hope it turns out to be nothing serious!

Regards

Trooper56

So glad you, too, are finished with chemo.  I was so glad to see your comment, Trooper.  Hope things have been good with you. 

Thanks for responding!!!!

Yes, Terry's knee is still giving him trouble . . . . not too sure what to think.  Hard not to worry when something just won't go away, you know? 

We're trying to see if it improves on its own without intervention . . . the oncologist finally started paying attention a bit more, which helped, in that she said if it didn't improve within a week or two after we asked about it the last time . . . she wanted to run some more tests (mainly a PET scan).  As scary as the prospect of that is to us, that there could be something serious going on, it was reassuring that we weren't just being shown the door . . . which is what they made us feel like for a bit there.  Terry wants to wait until after my birthday next month and through the holidays . . . as he doesn't want bad news before then.  I have to say I agree with that.  By then, we will have given it ample time to clear up on its own.  Hopefully, that will be the case. 

I started up with the site again . . . not just to ask for support, but to also try and help others with their own battles.  Naively, we assumed that once chemo was done . . . we wouldn't necessarily have this many questions about "What next?" . . . . but, I fear, this constant, "What does it mean?" syndrome may linger.  In his oncologist's notes, the written version of their opinions (seldom really articulated the same way) . . . she wrote, "Terry has a 48% chance at a 5-year survival, and a 50/50 chance after that for a longer remission".  She also said he was Stage IV when she met us . . . a little different from the "late Stage III/early Stage IV" we were told.  I know.  I know.  That's pretty much the same thing with DLBCL, but it was tough to see it in writing; just as it was to see that he was considered "high risk" for relapse/recurrence.  All things we basically knew . . . just reading it was hard. 

Anyhow . . . . Yes, I'm back.  We still both work full-time; so trying to find the time I'd really like to take responding to everyone who has been so kind . . . . is a challenge sometimes.  I've started, actually, "blogging" more on the site . . . . writing about how we're doing and how this whole thing makes us feel. 

Again, thanks for your kind words.  I welcome and appreciate hearing from you, as well as anyone else who needs/wants to chat. 

See . . . there I go again . . . with all my blah, blah, blah blabbering.  It's my "therapy".

Take care, my friend!

Hmmmm! Those stats 48%?? I mean, why not 47.799% or 49.3%?? or any other similar number! Thats all they really are numbers...and based on a vast sample of vastly different human beings. Personally I would read very little into them.

You do know that 86.45% of stastitics are made up on the spot, dont you! ;-)

I was given a 60% of being cured...which I was happy with. Afterall initially they thought I had primary stomach cancer ...at just 19%!! And that's after surgically removing my stomach!! Glad it wasnt as after 62 years Im quite attatched to it!!

Anyways, when I first went for chemo, I looked around the busy waiting room and very quickly realised that most of my peer group were all older, obese and nearly all looked very unfit. In comparison  I was fit, slim and in great shape. So I immediately changed 'my' 60% chance of cure to over 90%!!

...and never had any doubts or fears Id be 100% ok, which was the case. I do realise that post treatment there are supposed to be higher risks of heart problems (5×!) And higher risk of another cancer (1.5×) again just numbers and stats, which I acknowledge but chose to ignore. 

Incidentally regarding relapse... my cell pathology markers?? Show that Im not in the high risk group for relapse. My consultant said if I had xyz whatever thingys on my cells, Id be in a higher risk group...so another plus for me.

Personally I think my illness was a blip a renegade cell caught my immune system off guard...now its up to strength with reserves and in full on seek and destroy mode. So its Trooper56: 1 Cancer: 0!  And I think those rouge cells realise they messed with the wrong guy!

If its any consolation, I also have a bad knee!! But thats from 12 years in the military carrying ridiculous weights over long distances and leaping out of perfectly good aircraft several hundred times. Three operations two for torn cartiledges and one to try and repair a small patch of osteoartheritis aka worn out bone! 

Best of luck and stay away from negative thinking!

Once a soldier, always a soldier, I venture to say.  

Your story is truly inspiring and I so admire your "positive" outlook.  I, too, have fought many wars . . . problem is . . . for me . . . it's been pretty much the same enemy, over and over in the serious illness my husband has faced so many times.  This one, though, the cancer beast, was the toughest of them all.  Yes, I realize, I am "only" the carer, never suffering the physical torture my poor Terry has; but my pain was just as real, just as piercing . . . only more of an emotional type.  He, too, has always been extremely physically fit, as have you, reading from your posts.  I, too, believe it is one of the biggest reasons he has been able to survive so much.  Although everyone has their own story, I have come to learn that being "positive" can be practiced in many different ways.  For me, it has been facing the reality of each of his (our) battles surrounding his ill health (in spite of his being in top physical shape).  For me, living in a world filled with rainbows and warm, fuzzy thoughts, hasn't always been possible.  Once we managed to find a solution to one thing, we (I) was faced with another challenge that demanded focus and fact.  Once that was realized, the hoping (the positivity) began.  For me . . . staying on more of a "level" frame of existence (somewhere between elation and despair) saves my heart and my mind from riding the rollercoaster of emotion that left me (many, many times) "crashing" from one extreme to the other.  

We all handle things in different ways, finding what works best in our own situation.  

I'm afraid I mis-spoke earlier in saying Terry was given a 48% of a 5-year survival.  I have always been terrible with math; so, in re-reading my earlier post, I realized things were much better than that . . . it was, actually, a 62% chance.  But, as you say . . . these are all just numbers, pulled out of some sort of statistical record that means little when evaluating how a person feels.  It's far too easy to fall into the trap of charting a person's course, focusing only on them and not on how a person really feels.  

We were dong fine (pretty much) until this last go'round with the doctor's office about Terry's knee.  It felt as though they were all too willing to cast us out into the unknown sphere of life after chemo, which was scary to say the least.  His knee problem is probably due to some innocent reason for causing us worry . . . but, without having injured it and never having knee problems before, it was disturbing to try and understand how or why it became such a problem.  It's been over 7 weeks now and not a whole lot of improvement.  As much as we fear the worst, we are focusing on his otherwise well-being and hoping that if the doctor is willing to run a PET scan for us (as she now agrees it should be more fully evaluated if it persists) . . . then we will know as close to certain as we can come.  He wants to wait until after my birthday and the holidays to see if it will resolve on its own.  Again . . . we hope . . . but with that certain degree of putting things in perspective, realistically, to avoid that delusion of ignoring facts.

A "positive" attitude can, most assuredly, do wonders for a person's recovery in the wake of serious illness; but, it is my experience (after being told so many misleading, ridiculous excuses for his declining health), that the better measure is one that combines hope, a positive outlook, and reality.  

As I said, we each have our own way through this difficult maze of information and personal situations and, together, with so many others with so much experience with all of this on this site . . . we all have something to offer.  I treasure your story, your ability to stay so upbeat about it all and your honesty in sharing it.  Thank you, my friend.  You are a true inspiration!

Good morning  or is it good night....... I still get confused.

I do hope that a clear answer is found for Terry’s knee and sincerely hope that a fix can be found......soon.

You will see I do like a Nelson Mandela quote as you will see from my tag - but this one describes my approach to my very long medical journey.

"The brave man is not he who does not feel afraid, but he who conquers that fear."

The main thing we all have in this life’s journey is ‘Hope’ and indeed you have mentioned hope a number of times Dawn.

There are only a few numbers that defined our /my journey. “You now have 30 months on the clock.....” “......if the plan does not work it’s 100% that you will be looking for a wooden suit”.......... but the best one is..... “I am now 3 years 8 months past that D Day.......” that was set way back in 2013

I love this quote....... “If you're reading this... Congratulations, you're alive. If that's not something to smile about, then I don't know what is”

Let’s all hang our hats on the coat hook of hope and every morning put it on and every night hang it up again in the hope that we can put it on the following day.

I still deal with long term, unfixable health issues but on balance........ life is good.