Sudden worsening of symptoms nerve pain and lymphedema

ozymandible

I just had follow ups with medical oncology and radiation oncology.  I was able to drive there with no pain meds other than ibuprofen.  I don't take pain meds until I get home.  So of course I told them I wasn't having much pain.

Now I am having a lot more nerve pain which, IMO, is being aggravated by the sudden worsening of lymphedema.  Much of this may be my own fault as I had lapsed on exercises figuring if I could still eat and swallow why worry?  Also, I stopped doing exercises when rad symptoms were at their worst because I was breaking the skin on my already burnt neck when doing exercises.

I do have a referral for lymphedema rehab/PT in the works.  Need to call next week and see about it.  I think the lymphedema is so bad that it's inside and causing pain when I swallow but I am still eating but wanting only soup and blended items now.  I did get a referral for removal of PEG now I'm thinking maybe I should wait until after my first scan and until lymphedema settles down.

In the meantime, doing exercises and lymphatic massage again several times a day and trying to sleep somewhat elevated but still having enough pain to double down on gabapentin again and chip around on opiates again.  Using the heated rice sock again which I hadn't needed since they cut out my cancer in March.

Kind of losing my enthusiasm here since I was doing very well.  Was reading back into old posts and this seems fairly common and some of us are having to take round the clock pain relief for these issues years later.

So just medicating, taking it easy and focussing on these exercises instead of doing a lot around the house, cooking a lot or doing hobby stuff.  

Don't really know what I'm looking for here I suppose I'm whining, venting and seeking feedback.

 

Thanks for reading.

 

Ozy.

wbcgaruss

Well ozy

I think you are just experiencing the ups and downs of cancer treatment and recovery.
If you remember in the other post you have I commented how well you were doing and came through everything so well and seemingly so quickly.
Well maybe your journey was a little too good and you are not out of the woods yet.
So yes I think you know what's going on and the lymphedema is part of the problem.
I think also not letting bad days upset you and get you down it is the ebb and flow of cancer treatment and recovery.
I remember recovering and starting to feel really good for a good stretch of time and one morning I would get up and
just fell absolutely lousy.
Well, in the follow-up visits I had I mentioned this to the nurse I believe and she basically said cancer recovery is like that.
So I quit feeling over confidant and just took recovery one day at a time as it comes.
This happened to me for a couple of years but eventually, it gets farther and farther apart.
But you are not really there yet you are really still fresh out of just finishing treatment and probably have a ways to go yet
believe it or not.
But you are doing well, so stay on top of everything and take pain meds if you need them, no sense suffering any more than necessary.
You soon will not need them.

And for gosh sake don't be in a hurry to get your feeding tube out till you are absolutely positive you don't need it anymore.
So easy to remove and a sedated operation in the hospital to put back in.
I don't know why folks are in such a hurry to get their feeding tube out at the risk of it not being time yet.
They would not remove mine till I could maintain my weight for 2 weeks without using it.
But then again that was on the honor system I could have been supplementing my eating with tube feedings but then who am I
kidding but myself.
Also before my first cancer treatment would even start I had to have a feeding tube in or they would not start treatments.

Also just to note my first feeding tube was removed by a gastroenterologist and laying on a table he pulled straight up and
it didn't come out easy, felt like he was pulling my insides out, and when it finally popped out I had pretty severe pain for about 8-10 seconds.

The second feeding tube was removed by a Physicians's Assitant to the Thoracic Surgeon that put it in.
Here I am on the table again expecting the worst and suddenly she just sorta did a twist of the wrist and it was out I didn't even feel it.
Much nicer.

They were the same style tube I don't know if the guy didn't know what he was doing but he should have he was not a newbie.
So there ya go the same deal and 2 different outcomes.

When you are comfortable and confident get it done.

ozy you will get through this but you are not quite done yet, so be patient, be confident and take the good days with the bad.

As usual, I'm prayin for ya, I'm pullin for ya and I have confidence in ya.

Wishing You The Best-Take Care-God Bless-Russ

 

ozymandible

Thank you Russ.

Thank you Russ.

I just had another idea.  Maybe I ought to check in with my endocrinologist.  I have hypothyroidism and maybe rads cooked my thyroid and made it worse.  Depression caused by low thyroid hormone won't go away until you get enough thyroid hormone.  Been there, done that.  I haven't had labs done since just before chemo and rads.  Feeling kind of mopey here lately and I haven't been much of a moper for years.

Could just be everything is down to a dull roar finally with treatment overwith and enough downtime to allow grief in from husband's passing too.  Didn't really have time to deal with that or the psychological effects of cancer and everything.  My usual M.O. is to just stay busy and let everything fall into place but hard to stay busy when I don't feel good.

Maybe it is thyroid.  I've had thyroid related depression before and it gives me absolutely no motivation whatsoever.  

wbcgaruss

A Very Good

Possibility.
H&N people can easily get their thyroid damaged by radiation.
I have read it on her many times.
So you will figure this all out after a while.
Much of it just takes time but if your thyroid is damaged that doesn't fix itself.
I agree there are many factors here and the loss of your husband and needing to dive into a cancer treatment regimen is a full load on the mind.
And on the body.
I remember when my thyroid was underactive, really tired all the time.

Oh and again I extend my deepest Sympathy and Condolences to you in the loss of your husband.

Take Care-God Bless-Russ

 

 

ozymandible

Thank you Russ.  It really

Thank you Russ.  It really has been a terribly hard year.

ERomanO

Ups and downs

That really sums up H&N cancer treatments and recovery... and please, vent all you want. The roller coaster of life, even w/o cancer and the loss of a spouse, can be very rough on a person's emotions.  We're here to listen and give you thoughts, prayers, and a little advise, too.

Re:Thyroid.  My oncologists and PCP have been monitoring my thyroid function and last fall I was started on thyroid medication.  THAT was depressing to me because I put on 5 lbs very quickly without changing my routine at all.  So maybe my thyroid was over active??? It seems like my digestive system slowed down to a crawl as well.  I don't know if the GI issue is actually related or an uncanny coincidence, but I've heard from others about weight gain after starting thyroid meds.  I'll dicuss this at my follow up with my oncologists in November and my PCP in January.  I doubt if they will change anything, but it doesn't seem right in my mind to have a medication slow things down like this.

I've been up and down with my neuropathy, and I think it's kind of creeping up lately.  I was taking 300 mg capsules 4 times a day for quite a while, but have found myself not needing it as much lately, which doesn't make much sense.  I think I tend t go for long periods of time, especally during the day, without it, then have to load up in the evening, which reduces the overal amount I take in a day.  Not sure if that makes any sense, but the point is that it's just another section of the roller coaster of treatment side affects.

I can't comment on a feeding tube because I have no experience.  The girl singer that I work with is dating a radiology oncologist.  I was talking to him on night about my cancer and there wasn't anything new to him in my treatments and recovery.  But I found it interesting that after I told him that I lost about 30 lbs diring treatments he said if he had been my oncologist that the first thing he would've done was install a feeding tube.  My oncologists said they preferred to wait a few weeks to see how I was able to maintain weight.  In my case, after an initial 10 lb loss due to the anxiety of waiting for an official diagnosis, I lost about 2+ lbs per week and they felt that was acceptable.

Anyway, best of luck to you as you move forward, and I too would like to give you my condolences to the loss of your husband.

Eugene

ozymandible

Thank you Eugene.

Thank you Eugene.

Weight gain on thyroid meds can be eating more with a revved up metabolism.  It can also be because synthetics don't work as well for some people.  I never felt good until I went on desiccated thyroid hormone.

I do the same thing with my neuropathy that you were talking about.  Usually I need very little or no meds until bedtime then I load up but this week I've been round the clock with them.

I may leave the tube in until after my first scan.  That way it will be there if I need surgery or something right away.  I have been stable at around 145 for a month or so.  I was 182 back in January, lost about 20 after my surgery and went down to 145 after chemo and rads.

I think this pain is due to radiation damage and lymphedema.  It's on the right side of my head.  Even my hair hurts!  

SuzJ

ozymandible said:

Thank you Eugene.

Thank you Eugene.

Weight gain on thyroid meds can be eating more with a revved up metabolism.  It can also be because synthetics don't work as well for some people.  I never felt good until I went on desiccated thyroid hormone.

I do the same thing with my neuropathy that you were talking about.  Usually I need very little or no meds until bedtime then I load up but this week I've been round the clock with them.

I may leave the tube in until after my first scan.  That way it will be there if I need surgery or something right away.  I have been stable at around 145 for a month or so.  I was 182 back in January, lost about 20 after my surgery and went down to 145 after chemo and rads.

I think this pain is due to radiation damage and lymphedema.  It's on the right side of my head.  Even my hair hurts!  

Ozy

Talk to the people in radiarion, they can help you with cleaning, and protecting the burnt area. Mine was awful, but once we had done the cleaning, creaming, dressing, and bandaging it healed new as a babies ...

 

Lymphadema specialist are wonderful, mine did massage on the Lymph nodes then recommended a lymphodema garment I wear to bed, it keeps my neck... so smooth..

ozymandible

SuzJ said:

Ozy

Talk to the people in radiarion, they can help you with cleaning, and protecting the burnt area. Mine was awful, but once we had done the cleaning, creaming, dressing, and bandaging it healed new as a babies ...

 

Lymphadema specialist are wonderful, mine did massage on the Lymph nodes then recommended a lymphodema garment I wear to bed, it keeps my neck... so smooth..

Thanks Suzj.  My burns are

Thanks Suzj.  My burns are long gone but the dang lymphedema and nerve pain are probably here to stay.  I'll call the PT/rehab people this week.

Nice to hear it might actually help a lot.  I do the massages all day but the next morning my neck is all blown up again!

Mainestateofmind

Lymphedema

The lymphedema specialist (PT who is certified) has made a big difference for my husband. (Surgery for BOT tumor and bilateral lymph nodes in March 2021; Radiation April/May 2021)  Besides exercises, massage, and warm/cool packs, he also has a compression garment that he uses between kinesiotapings on his neck.  He tried sleeping on a wedge but found it so uncomfortable as a side sleeper that he puts up with the morning edema until he starts moving around.  The kinesiotaping has really helped.  Sorry about the reoccurring nerve pain.  He deals with this too.

ozymandible

Thanks Maine.  I finally got

Thanks Maine.  I finally got hold of the scheduler for the lymphedema PT specialist and I can't get in until December so didn't make an appointment figuring it would be sorted by then.

Maybe I'd better call back and schedule something....

ProustLover

Mainestateofmind said:

Lymphedema

The lymphedema specialist (PT who is certified) has made a big difference for my husband. (Surgery for BOT tumor and bilateral lymph nodes in March 2021; Radiation April/May 2021)  Besides exercises, massage, and warm/cool packs, he also has a compression garment that he uses between kinesiotapings on his neck.  He tried sleeping on a wedge but found it so uncomfortable as a side sleeper that he puts up with the morning edema until he starts moving around.  The kinesiotaping has really helped.  Sorry about the reoccurring nerve pain.  He deals with this too.

Compression garment

Thanks for letting Ozy know about the compression garment...it kept going through my head that several folks on the forum had talked about different compression items for lymphedema.  Ozy, if you search the CSN content for compression, you might get some leads to help until you finally get in to see specialist.  Wishing you some kind of relief asap.  

ozymandible

ProustLover said:

Compression garment

Thanks for letting Ozy know about the compression garment...it kept going through my head that several folks on the forum had talked about different compression items for lymphedema.  Ozy, if you search the CSN content for compression, you might get some leads to help until you finally get in to see specialist.  Wishing you some kind of relief asap.  

I have a little compression

I have a little compression chin strap thingie but I don't use it that much.  My chemo doc thinks I have a pinched nerve in my neck.  I have arthritis in my neck and it makes me more susceptible to pinched nerve.  A pinched nerve in that area can cause occipital neuralgia.

I think it's a combination of lymphedema and occipital neuralgia and of the two the lymphedema is far more tolerable. The occipital nerve pain is unbearable when it starts up.  

I am managing by staying on schedule for pain meds, nsaids, hot pads and massage.  If I need to drive which is extremely rare, I take keterolac which is an extremely strong nsaid type drug used for migraines so I get pain relief without the sleepiness I would have with opiates.

Keterolac is fantastic but it's supposed to be very short term I think it causes kidney damage or something if you take too much too long.  It is not supposed to be taken for more than five days.  I take a few here and there only when absolutely necessary to get through a trip to the doctor or something.  On those days I will take one or two depending on how long I'm running around.

I'm managing and sometimes I even do useful things like laundry and dishes.  

Was kind of a drag to go back to my tube again because it hurt to chew but I suppose there's no shame in it so many of us have to be doing that for so long.  I still drink liquids and soup and do exercises and stuff and I swallow all the time so I don't think I'm going to lose that still doing meds by mouth too.

I am impatient.  I need to be content and just plod along I suppose. 

ozymandible

Mainestateofmind said:

Lymphedema

The lymphedema specialist (PT who is certified) has made a big difference for my husband. (Surgery for BOT tumor and bilateral lymph nodes in March 2021; Radiation April/May 2021)  Besides exercises, massage, and warm/cool packs, he also has a compression garment that he uses between kinesiotapings on his neck.  He tried sleeping on a wedge but found it so uncomfortable as a side sleeper that he puts up with the morning edema until he starts moving around.  The kinesiotaping has really helped.  Sorry about the reoccurring nerve pain.  He deals with this too.

I wonder if the lymphedema

I wonder if the lymphedema aggravates the nerve pain.  Maybe the lymph pushes on the nerves when it's backed up or something?

wbcgaruss

Well Here's My 2 Cents

I did a search for "compression garment for lymphedema head & Neck cancer" and here is a link to the results of the search.

https://www.google.com/search?q=compression+garment+for+lymphedema+head+%26+Neck+cancer&client=firefox-b-1-d&ei=NwheYfiRK8-4tAaQkaLQDQ&ved=0ahUKEwi4iZCH0bbzAhVPHM0KHZCICNoQ4dUDCA0&uact=5&oq=compression+garment+for+lymphedema+head+%26+Neck+cancer&gs_lcp=Cgdnd3Mtd2l6EAMyBQghEKABMgUIIRCrAjoHCAAQRxCwAzoFCAAQgAQ6BggAEBYQHjoJCAAQyQMQFhAeOgUIABCGAzoHCCEQChCgAUoECEEYAFDmZlj0swFg0tUBaAFwAngAgAGgAogB7R2SAQYwLjEwLjmYAQCgAQHIAQjAAQE&sclient=gws-wiz

It shows wearable items for the head and neck area at the top for between $30-$150.

Here is an article on compression which explains pretty well and in it they recommend you buy 2 of whatever, one to wear and one to wash and standby.

https://www.cancerresearchuk.org/about-cancer/coping/physically/lymphoedema-and-cancer/treating/compression

Hope it helps in some way-Take Care-God Bless-Russ

ozymandible

Thank you everyone.

Thank you everyone.