Fixing or living with chronic side effects

Back again with a list of  current meds I'm on: 

Hi again , just dropping in past from the Non-Hodgkin lymphoma group.

Chemo used across cancers will have very different effects and 'left overs'. Blood cancer treatments are often very strong as this is the main way to deal with this type of cancer and can result in residual toxicity.

Was it R-CHOP you had?...... my 6 cycles of R-EPOCH were actually ok but the two Stem Cell Transplants were rather different resulting in years of recovery.

When was your last clinic with your team?

What have your team said about the various issues you are having?...... normally the majority of chemo toxic side effects will gradually reduce during the months following treatment but things like Fatigue, Peripheral Neuropathy and many others can last a rather long time.

As for your current meds...... never seen the need to go down the Alternative diet and herbal meds route and if you thinks is doing some good - great.

De[pression is a debilitating condition, have you taken with a medical professional about this?

I know that the COVID restrictions have made support challenging but have you reached out to the likes of Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing and a lot of the support is now available by telephone and virtual.

Our Macmillan support line is open every day from 8am to 8pm and it's free to call. Clicking here will give you more information on what the Support Line offers. Alternatively, if it's easier for you then you can email them or use the online chat.

Mike - Thehighlander

Mike,  good to hear from you again and I found your reply helpful and thought-provoking

Consequently I spent all (yes all) day yesterday opening it up, commenting and turning it into a nice dialogue which I finally succeeded in posting on the new system.   This morning though, when I came to check, I found two identical copies of my posting sitting on this thread.  I decided I'd better delete one of them so I did that.   But inexplicably this has caused both of them to disappear.  

I really don't want all my work yesterday to be binned and lost, so I'm desperately trying to find out how to restore the one I didn't press delete on.    

Help please!

I read your profile and I noticed that you mentioned your blood tests being OK. 

As I'm sure you know, blood tests aren't a good way to monitor NHL, so I'm curious about when you last had imaging done.

It sounds that several things impacting on your health happened around the same time.  I'm assuming that you ceased contact with your haematologist after you stopped chemotherapy as the side effects you mention would have warranted specialist evaluation and management and you don't mention that having happened.

I do think it would be worth having an evaluation of the continuing deficits done now and getting a specialist opinion on how they can best be managed.

Unfortunately, I can't see your old activity so I have no information about the type of NHL you had or what follow up there was about the bowel cancer.

Thanks Lolie.  The blood tests I've been recommended by my AT doctor are CBC, BUN and Cr, hs-CRP and LFT.  I'm no expert but vaguely remember that Neutrophil, CRP and Lymphocyte readings can give a good indication of one's resistance to NHL.   I've been sending these results to the doctor regularly,  and after analysis been receiving feedback that everything's fine with my NHL even though some individual readings show out of limits.   Don't really know how the Dr's analysis comes to that conclusion;  just have to trust them.  

Meanwhile my occasional bowel and oncology consultant on the Isle of Man orders his own set of NHS approved bloods for me, does a feel-around of my lymph nodes and equally reports my NHL is well under control.

On the basis of the above, no doctor has seen the need to order any imaging, so again one just has to trust their judgement.  I did have a head CT scan in Oct 2018  but I don't think that's what you're asking about

I tried to keep in touch through haematology nurses after I shot off to other countries to escape fearful prescribed chemo, but when I went down the AT road,  they lost interest.     On the other hand,  when I was reluctantly forced into chemo and the side-effects didn't go away,  I complained regularly to the occasional bowel and oncology consultant on the Isle o Man about my chemo brain at each subsequent appointment,  but this all seemed to fall on deaf ears.

I also complained and asked for support from the NHS' OPMHS (Old Persons Mental Health Service) clinic on the Isle of Man for my chemo-induced cognitive and memory deficits,  but that hasn't got me anywhere either.  

Re follow-ups, it hasn't helped that I have itchy feet and no permanent  home.  Instead I'm constantly rotating between 3 or 4 semi-homes.   I'm now locked out of both UK and the Isle of Man by Covid quarantine regs that aren't presently showing any signs of getting lifted,   This doesn't go down well with the NHS whose services rely on their patients living in one permanent home.     I can't argue that my itchy feet are chemo induced;  I've had them all my life,  but I can argue that chemo-induced cognitive deficit prevents me planning and making decisions about settling down more permanently somewhere.

PS:  still hoping to find a way of restoring  all the nicely interleaved comments I posted yesterday on Thehighlander's reply above.

Hi , I have been out all day so just picking this up.

I will send this to the site admin to see if they can help you out.

Thanks Mike.  That might help,   I did send quite a detailed account of this loss to Macmillan head office late last Friday, asking if there's a hidden trash bin somewhere from which my reply to you  could be restored,  so hopefully after the weekend I should get some answer.  

Hi , I think file 13 had been emptied 

Below is the redraft of my lost reply to TheHighlander on 12thSept.     Please feel free now to jump in anywhere and comment or disagree.  Dialogue is the key to understanding.

Mike,  good to hear from you again.  Nearly 2 years now since we were last in touch, but I do value  comments and dialogue even tho' I don't always agree with everything that's said !  [grin]   I'm turning your post into a dialogue by breaking it down into parts and inserting my comments in between.  Hope this encourages others to join in too

Chemo used across cancers will have very different effects and 'left overs'. Blood cancer treatments are often very strong as this is the main way to deal with this type of cancer and can result in residual toxicity.

Yes,  I fully agree, and the main reason I'm here is to seek advice on dealing with that toxicity which has been making my life miserable for about 2½ years now.   More details if you click on my Sleepyzz and see my profile

Was it R-CHOP you had?.......

Yes, I think it was R-CHOP, but unfortunately not quite sure because although my chemo was originally prescribed by the NHS, itchy feet (as mentioned in my profile) and other factors, caused me to undergo it elsewhere and not been able to get the details.

...my 6 cycles of R-EPOCH were actually ok but the two Stem Cell Transplants were rather different resulting in years of recovery 

Hmm..  would be interested to know more about that lengthy recovery.  Have you had  slow but noticeable recovery over those years or are you still hoping and waiting for it in the future?   In my case some side-effects (e.g. hair loss) recovered quickly, but brain-related slowdown, memory loss and cognitive abilities don't feel to have recovered at all

When was your last clinic with your team?

My original team was based in Liverpool, but I've had no contact with them for almost 3 years.  There's just one bowel & oncology consultant on the Isle of Man who I suspect  is  loosely linked to the Liverpool team, and he's been seeing me at a local Isle of Man clinic every 2 or 3 months up to Feb 2020 .   I'd been having regular blood tests & checkups there and  each time was told my NHL was doing fine,  However whenever I mentioned the devastating chemo side effects on my mental health that weren't going away,  those complaints fell on deaf ears.  Had to postpone my last appointment due to being stuck off the Island unable to meet tough Covid quarantine regs there.  Rescheduled it for October but gonna have to postpone that too as there's no chance of the IoM lifting their quarantine regs given the deterioratring Covid situation in the UK mainland.

What have your team said about the various issues you are having?..

Nothing really because I haven’t been in touch with them for so long. It would be nice if I could somehow re-establish contact and dialogue with them, but I suppose that would mean going over my Isle of Man consultant’s head, and I don’t actually know how I’d do that while I’m still overseas

.. normally the majority of chemo toxic side effects will gradually reduce during the months following treatment but things like Fatigue, Peripheral Neuropathy and many others can last a rather long time.

Hmmm.. well there's quite a difference between "rather a long time" and forever, isn't there?  I'm very interested to find out more about this,  specially for brain-related effects.  How about your own experiences on this, Mike?  Have  yours faded away yet,  and  what timescales are we actually talking about?

As for your current meds...... never seen the need to go down the Alternative diet and herbal meds route and if you thinks is doing some good - great.

No it's not so much about doing me some good;  more to do with reducing the risk of NHL resurging again  if my body drifts back to an environment of sugar, alcohol, dairy, red meats etc. which allowed NHL to flourish before, what would there be to stop it flourishing again?

De[pression is a debilitating condition, have you taken with a medical professional about this?

Yes, I know and have felt that for quite a while.  I spent all of the last cold grey rainy winter on the Isle of Man trying to get NHS' OPMHS (Old Persons Mental Health Service] to refer me to some psychiatric support for that very reason.   Never made it, although at one point it did look fairly close.

have you reached out to the likes of Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing and a lot of the support is now available by telephone and virtual.[/quote]

Yes, I've exchanged emails with several of MacMllan's support and nursing staff and that's been great, specially  Vicky who as been providing amazing continuity for many weeks.   Nobody seems to have been able to tell me much about countering  chemo side effects though. Hence that's why I'm here now

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Hi  sorry you had to do your post again and sorry fir not getting back to you sooner but life has been rather busy.

So I will just ramble and hopefully try and answer some of your questions.

Due to the specific nature of the drugs used in blood cancer treatments I would think the best people to deal with the treatment ‘leftovers’ would be your Heamatology Consultants. Our Heamatology Unit actually have a psychologist work with patients post treatment especially those who have been through Stem Cell Transplant and our local Maggie’s Centre also provides the sane service across all cancers.

My journey went from GP, Dermatology, Oncology, Heamatology, Stem Cell Transplant Specialists with a deviation into Respiratory, Cardiology, Audiology and Dietetics due to some of the reactions “left overs” from some of the treatments chemos used....... you don’t get a plumber to hang a door type thing.

I would say my recover was a good 3 years. It took 3-4 months to get back walking unaided then after a further year of getting bye I was able to attend a cancer focused circuits class and this helped my overall fitness especially in my legs, arms and most importantly my neck where my growth was as this helped develop the muscle loss and encourage the nerves to live again. This was so successful that the start of last year I asked my GP to remove all my pain meds from my repeat prescription.

I was so sick with my final chemo I developed the “most impressive Hiatus Hernia" my consultant said so eating was a mission and it took the first 4 months to overcome my eating problems  I still have the Hernia but amazingly I don’t have any problems with it and as long as this stays the same my team don’t want to touch it.

The Peripheral Neuropathy in my hands and feet took a good two years before I could say that it was not seen as a big problem but even now, 5 years on I have a problem with my right hand with my ‘ring’ finger locking all the time bent over at the knuckle. Just before lockdown my GP was looking into this but we have put this on hold.

Chemo brain is interesting, it was very bad during treatment and for about 9 months OST treatment before my wife was noticing I was not having ‘lapses’ in concentration but we both agree that I am still challenged remembering peoples names. We have a large circle of friends and church friends and I often have to do the A to Z to try and find first names, is it me getting older or ‘leftovers’?

The main ‘leftover’ is a weak immune system that has resulted in 5 times back in hospital (31 days) over the past 4 winters with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x2, Sepsis x2 and A Fib. I actually have a set of emergency antibiotics for head off chest infections and my GP trusts me to take them if and when required so two sets have been used over the past 14 months and AI can request more on prescription,

I do thing that continuity of care was a very important part of me getting through the post treatment journey so you have to wonder if the best people are looking into your ongoing ‘leftovers’?