Sudden worsening of symptoms nerve pain and lymphedema

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

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

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 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!  

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..

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.

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.

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.