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3 weeks since completion of 6r of R-chop DLCBL

Uncle Fester
Posts: 5
Joined: Dec 2019

I'm now exactly 3 weeks since completing the 6th round of r-chop for stage 4 DLCBL. I'm 46 and was reasonably fit up until diagnosis but have lost some fitness over the past year as main tumor site was affecting exercise (I didn't see a health professional as thought it was a work injury). I'm now trying to build up fitness before I receive 2 more rounds in Feb that will access the brain - a better to be safe than sorry extra. I'm walking about 6 or 7 km daily and have a knee that has soreness in certain movements, only. I often also feel stiffness that isn't normal muscle soreness. Could this all be part of recovery?

I have been told I can return to work for the interim and would like to learn of success stories that show a fast recovery is possible.

PBL
Posts: 232
Joined: Jul 2016

Hi Uncle Fester, and welcome!

I am not sure this is what you were asking for, but here is what comes to my mind on reading your first post:

1.  You are relatively young and only just out of a rather harsh treatment. I would say not to worry, as you are already doing great! Walking six or seven kilometers a day three weeks after your sixth round is a sure sign that you should have no trouble reaching a very satisfactory level of fitness... I had my sixth round in mid-June 2016 (was then six years older than you are now), and still am nowhere near that kind of performance after three years of physiotherapy and rehabilitation.

2. I just couldn't wait to go back to work, but have ever since been struggling with my new limitations - persistent pain and fatigue, despite my efforts at recovering my full capacities.

3. You may want to discuss the soreness and stiffness with your hematologist and PCP, as these might be side effects from your treatment (thinking neuropathy here) or possibly sequels of your initial tumor, or something else - and they may have some ideas to help you with those issues, such as physiotherapy, rehabilitation, pain management, etc.

 

In a nutshell, be kind and patient to yourself and do not try to tough things out. Full recovery can be a long and slow process, but keep faith that you will eventually get there.

I hope this helps. You may want to tell us a little more, as this could help us offer more spot-on suggestions.

Kind regards,

PBL

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

Fester,

I woman at my church, about 50, was diagnosed with NHL Stage 3 and CNS involvement over a year ago.   When you say you will receive tretments "for the brain," that has to address suspected CNS involvement (central nervous system).   This is rare, but usually treatable.  It usually involves either chemo applied into the spinal column, or into the base of the skull itself.  Methotrexate usually, and perhaps some other drugs as well.

She is well and in total remission today.   New Year's blessings and good luck,

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

How do you light that light bulb in your mouth ?   Seems like a great environmental ability !

 

Uncle Fester
Posts: 5
Joined: Dec 2019

Happy New Year and thank you for responding PBL and Max.

The reason I may seem anxious to return to fitness is that my work required it and I relied upon it. Up until the "injury" I had kept myself fit outside of work hours in order to perform my job more easily. Now I would struggle to last a shift and believe I would be susceptible to injury.

I mentioned that I had had the "injury" for more than a year before seeking advice. This was because I actually believed that it was an injury as I remember hearing/feeling a pop. I had considered seeing a physio but read online that muscle injuries in around the ribcage take a long time to heal so just decided time was the remedy. I stopped exercising outside of work and was still able to do my job without much hindrance. I had a couple of weeks off work soon after this and the "injury" improved in size and tenderness so I was happy that time/rest was the answer. After returning to work and as the year rolled on the size would slowly grow but usually, I thought, after a bump or excessive use. I was starting to think I would ask for compensated time-off to properly recover. At this point the possibility that it was something else did enter my mind but still was surprised when I did learn that it was a tumour and that it had "destroyed" two ribs. I guess I'm an excellent example of why trying to use the internet as a diagnostic tool is folly.

My hematologist is doing the brain chemo to be safe. I think it is similar to the other treatment but with a blocker taken out to enable it to enter the brain. My goal is to get as fit as I can in the meantime so that treatment and recovery will be as smooth as possible but the movement issues are getting in the way. I am giving walking a rest today and I am booked in to see an osteopath next week who can hopefully provide some help and answers. I feel as though I have aged 15 years in the space of 1 and am hoping the issues with movement may be a lack of muscle and flexibility.

Max, I think many of us here can probably do a reasonable Uncle Fester impersonation. For me the light bulb trick is the final missing piece for complete transitioning.

 

PBL
Posts: 232
Joined: Jul 2016

Hi again Uncle Fester,

Yup! That disease will definitely make you feel old!

I have primary bone lymphoma. Is that also your case, or am I mistaken? If so, the pain/discomfort/restricted movement may go on for a while - although I have also come across (in cyberspace!) others who said they felt a substantial improvement as soon as treatment was initiated. 

The chemotherapy in itself can also induce muscle wasting - once again, better discuss those issues with your medical team.

Happy and Healthy New Year to you.

PBL

Uncle Fester
Posts: 5
Joined: Dec 2019

Hi PBL and thanks for responding.

My biopsy of the bone marrow was all clear - very grateful of that. I was told that the broken ribs occurred because the tumor had weakened the bone. I assume the destruction was because of the delay before I sought professional medical advice.

 

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I had follicular lymphoma and was able to keep working when going through my chemo. My job is not physical but mental. Beside work I tried to keep my brain challenged by working puzzles and such. That meant I was less active then I had been which was not a lot. Once treatment was over and I realized the effect of the inactivity I made a point of being more active. It is still something I need to make myself to do. Getting older isn'at helping.

Good luck Uncle Fester.

Happy New Year to all.

Uncle Fester
Posts: 5
Joined: Dec 2019

Hi Iindary,

The getting older factor is hard to ignore. I remember speaking with a few people about my declining fitness before diagnosis and the "getting older" effect came up on a few occasions. I guess I'm trying to determine if this is my new paradigm. Not all of my physical changes may be because of cancer and the treatments.

PBL
Posts: 232
Joined: Jul 2016

I, too, ascribed to aging my declining health and physical fitness in the years prior to diagnosis. My then teenage daughter would get mad when I'd say that I was getting old - as a matter of fact, the first thing she said when I told her I had lymphoma was "See, I knew you weren't just getting old!".

Some among us lymphoma patients say we are "damaged goods". I believe the term is appropriately coined. At least it helps account for the discrepancy between age and performance...

illead's picture
illead
Posts: 863
Joined: Aug 2012

Are you by chance on statins?  They definitely can cause muscle soreness and stiffness.  Maybe you are new to taking them or maybe the chemo caused them to increase that side effect.  Just thought I would throw that out there.

Becky

po18guy
Posts: 1099
Joined: Nov 2011

Had my right knee donein the 90s. Surgeon said that I'd be back for the other one. Well, I've cheated him all these years but his trainee will probably get the job. It seems that our knees are designed for walking and running into a fight or from one! Sideways, not so much. In my case, it was a tear in the anterior horn of the medial meniscus. Easily fixable, but the snap-crackle-pop in my mornings is no longer Rice Krispeis - it's my joints. :-(

A lot of drugs can cause joint pain and stiffness. It could even be a little post-treatment rebound of your immune system, the pendulum swinging a bit too far and going into auto-immune territiry. A lot of these situations are never diagnosed and doctors are exceedingly happy when they go away on their own.

Uncle Fester
Posts: 5
Joined: Dec 2019

I was concerned that it could be a torn meniscus but there isn't any obvious swelling and the soreness is only really obvious when doing movements like going upstairs or getting in vehicles. Also, I can't remember an incident that may have caused such an injury which, by reports, is painful.

I've been off all medication for almost one week. The general tightness restricting movement is in the hips. I have noticed that I have soreness around the site of my last cannula so perhaps I'm still healing quite slowly.

I've discovered that marching on the spot on a soft surface seems to get the heart rate up without putting much force on the areas of concern. 

 

po18guy
Posts: 1099
Joined: Nov 2011

A torn meniscus may be more solvable than pain from immune system malfunction or chemical treatment. I tore my right meniscus by simply crouching down and standing back up. Not lifting anything and I was probably 185 (at 6-02) back then. It did swell substantially an hour or two later - but that was only my experience. A good orthopedic doctor will be able to trigger the pain by a well-placed fingertip on your knee - if that's what the problem is.

However, being off meds for one week, it seems more likey to be a side effect of one of the drugs. Have you lit up doctor's phone line for some guidance?

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Our youngest daughter is a massage therapist, who does not live close to us. When my left knee started causing problems her response was "the knee is the dumbest design for a joint in our body". So I have an orthopedic Dr I see about once a year. He gave me a knee brace to stabilize the joint. Did great the first year & half. About that time I started getting a massage 2 - 3 times a month. There are 3 at the spa who have training for therapy massages. They have done a lot to keep my legs muscles knot free. Last year we, my husband & I, started going to a gym to keep our aging muscles moving more. When a muscle around the back of the knee stiffened up the muscle therapist recommend using the machines to work the muscles but at a low weight level so as to not cause any damage but enough to "wake up" the muscle. It worked. I do need to see the orthopedic Dr just to make sure there is nothing else happening in that knee. What I am getting at is that as we get older it take a little more to keep the machinery we call a body, running. 

When there is bad knee pain a Dr has to be seen. Seem that dumb joint can develope some nasty problems that only a Dr can help with.

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