Hi, I haven't posted in awhile. My husband Mike had chemo and rads last spring. He had a hard time but made it through. In January his neck started to swell again right where the nodes originally had swelled. CT scan showed what they call necrotic tissue and its growing. No biopsy, We are waiting for neck dissection surgery hopefully by the end of March.
Mike's pain from his neck is awful and is getting worse, if he moves his head or lays down too flat. It seems to come in waves. Has anyone else had this type of pain with nodes? We are waiting for the ENT oncologist to call in an Rx for meds and to advise. Any thoughts?
Thanks so much
Josee

So sorry to hear of your husbands after treatment issues. Maybe steroids would help with the swelling. Once the swelling goes down his pain should ease up a little.

Best wishes!!!!

I had severe pain from an enlarged lymph node. Opioid meds helped, mainly a fetynal patch. I have an electronic bed to raise my head, but there are wedge pillows or head part can be raised, that may help. There are other meds too the dr may prescribe. I hope your husband feels better.

Sorry to hear about your husband's issue. Are they sure it's necrotic tissue? Without a biopsy there's no way to know for sure. I am not sure how that would show up on a scan... hopefully they deal with it quickly whatever it is. best of luck..

Thank you all for the responses!
@Cherlyd They didn't do a biopsy, they didn't want to waste time because whatever is there needs to be removed. He had a small residual node about the size of a pea that they didn't want to remove after treatment was completed last year. They thought his body might resorb it. He got so weak and was hospitalized for 14 days after his rads and chemo were done. He needed TPN nutrition (IV feeding)
The doctor forgot to order a post treatment CT scan in October when we were there last and it took till Jan to get another ordered, by then his neck had started to swell.
I am trying to keep positive but its so hard to see him going through so much pain again. I've convinced him to use the M-eslon 15mg slow release we have at home and Statex liquid for breakthrough till we get new Rxs from the doctors. Its definitively helping more than tylenol.

Thanks again!
Josee

Well I wanted to let you all know that he is doing better since the medication has been adjusted. He started 30mg M-eslon 12hr slow release and is starting gabapentin to help with nights.
Our chemo nurse took matters into her own hands and had Mike's chemo oncologist take care of the Rx's for us since ENT hadn't done anything 2 days after urgently asking.
What is the recuperation like for radical neck dissection? The ENt said they were going to take all of the sternocleidomastoid muscle and lymph nodes out on that side. Doc was saying a week, that isn't what I've been reading? Just wondering

take care
Josee

I had a RND with the vein, nerve, and neck muscle removed. I was in the hospital overnight, in thier "step down" section like ICU, had a drain during stay, and ate a BigMac when I arrived home. I had pain meds like oxycodone, but pain was minimal, neck was just a little restricted in movement. The stitches were taken out closer to 20 days being after radiation, healing takes longer. I have an electric bed, so kept inan incline. The hospital will give instructions own discharge. I think effects are more long term, as far as lympodemia, tightness or leather neck. No heavy living over 10lbs for a few weeks. Good luck with everything.

Josee, glad that you have got his pain under control as that is very important. There is no need for anyone to be in pain.
As for the radical neck dissection, I agree with Paul. Recovery from the surgery is very quick and is usually pretty pain free due to nerves being cut. Discharge is usually the following day.
However the side effects take quite some time. He will need lots of physiotherapy to help with shoulder and neck movement which are the main areas of concern. Please don't delay on this. It is crucial for recovery.
Tammy

Hi a neck dissection actually isn't too bad they cut the nerves so the pain is minimal - you look like hell but it feels ok because you are numb. I gave up my pain meds day two - I wasn't in pain and they messed with my sleep. I had a tongue graft too so I was out - in 10 days for good behavior - I had two drains removed day 2 and after that it was my tongue that took the most time to heal.
He will have shoulder and arm issues after and will need physio to reclaim and improve movement - mine is about 98-99 % normal now.

@paul - that crap will kill you faster than cancer... (Big Mac!!! Ack!)

So glad your hubby is doing better!

I think the commercials have subliminal messages lol. I usually get a BigMac after surgery, idk why. One time I did get sick. ENT said, maybe it's not a good idea after having day surgery lol.

Or ever!!! Eeeeuw!!! At least go for a gourmet burger if you must masticate a critter!

Sorry - I'll stop hijacking...

Thanks alot everyone I'm glad he's feeling better too. Not sleeping great but so much better than b4.
We finally have a date for surgery, Mar 20th. I'll be glad once he's safe back home and this is behind us.

I've shared your comments with Mike, he feels better knowing its not worse than rads! I'll keep you posted!

Joseee

Well, we haven't had the few weeks we thought. Mike's surgery lasted 5.5 hours. The doctor came to me and explained that the upper surgical margins near the base of Mike's skull were not clear and there was nothing more he could do due to the proximity of important structures. It all came back cancerous from the biopsy, even the extra sample from the margin that was not clear. They told us last week he can't have any more radiation in that area because it had max dose last year. They have said there is a zero percent chance of a cure now. We meet with chemo for info on whether they can do anything to slow it down. This is very hard. Any ideas for extending Mike's time? Dietary etc?
Josee

Im very sorry to hear this update. Is it possible to have a second opinion at another top facility?

As far as your dietary concerns, a healthy diet is always better. I dont know of any scientifically proven studies which support it extending anyones time. Unless it has been scientifically proven thru years of studies it wouldnt be something that anyone here would know about. They may be able to suggest some healthy ideas but at this time there isnt anything non-medical that can reverse this. Im very sorry!!!

Best wishes with everything you are dealing with. Im sure its very difficult for you right now, my heart goes out to you. Is hospice something available as a resource for you in Canada? Ive heard they can help tremendously. They are specialists and know how to handle a situation like this.

We are considering another opinion but we know we are at one of the best facilities in the area. There is a hospice near us. Thanks I will let u know what his chemo doctor says. he is also head of palliative care for the cancer centre.

Josee

As suggested, I would see about a 2nd or 3rd opinion. You may want to look into High Dose Intraopertive Radiadion Therapy (HD-IORT), Brachtherapy, Radiosurgery aka Cyberknife. These are high dose radiation treatments in less time, to specified areas, while certain vital organs or structures are protected. Not all CCC will tell you all the options available or send you elsewhere. I had 5 recurrences. I had positive margins, LVI, PNI, after my 2nd neck dissection, and cancer did return as expected, but in a month. The next treatment I had, for a cure, was a neck dissection, my 3rd, along with HD-IORT during surgery, with a pec flap, so radiation could be done a 3rd time, along with chemoradiation for 5 weeks. In total, I had 130Gy of radiation, and some here about the same or even more. Reirridation is limited to the toxicity level of vital structures, but can be done in ways described above, and this is where the doctors experience, and training comes into play.

Good luck, and hope this helps.

We are considering whether or not to have a second opinion. We will decide once we see his chemo doc on Thursday. We asked the radiation doc last week about brachytherapy, He said no because it is in the same location and max dose has been reached already.

Will keep you posted
Josee

Radiation treatment dosage is usually around 70Gy, but there is usually more they can do the 2nd time, in my case a 3rd time using different types of treatments, and radiation techniques with dosage and volume, and by protecting the vital structures like brachial plexus nerve, and others that have lower toxicity levels, and use flaps for protection, and sometimes to do more radiation. As you probably know, chemo is not a cure, only radiation and surgery is. If the doc said, no, which happened to me twice, I looked elsewhere, and found an excellent doctor that did a type procedure I was looking for, for a cure. Good luck.

Josee,

So sorry to hear the current status. I know you are down and have every right to feel somewhat defeated but do not give up. It is too early in the war. Just because this one dude throws his hands up and says "done - no cure" is NO reason to quite. This is one person's opinion.

Listen to Paul and the others who have had recurrences and all sorts of therapies that exceed "standard of care" guidelines, and that is what they are, not rulings from the Supreme Court.

Seek out other opinions until you find one that offers some alternative hope and options. Of course, QOL issues weigh the other side of the scale but at least you can then make a more informed decision as you have a wider range of paths forward.

Hang in there, this is only round one! You go girl!

oh - and NO just means to say thank you and make the call next on the list!

Well said, Don. We have similar thoughts.

Hi there.. I was treated at PMH and they are top notch, I think you mentioned your surgeon was the same as mine. I would definitely look into clinical trials if you can. PMH is not one of the best - it is the best... # 1 in canada, and top 5 in the world. But that should not prevent you from getting a second opinion. Mt. Sinai though is doing some amazing research maybe you could seek out a second opinion there...? Just because a surgeon says he can't do something there is always someone out there willing to try.

hugs...