Hi, Roger
I don't know how common it is for lymph nodes to take a while to resolve, but it certainly does happen! How did your appointments go this month?

Hi Roger,
Kevin's nodes dissolved during the chemo only phase of tx. By the end of the 6 weeks they were all back to normal. He had many involved, but did not have any surgery. The rt and chemo, we hope, finished them off!! You can see by our signature we aren't far out of tx. It really does get better rather quickly. It just doesn't feel like it the first few months. There will always be residuals though, I'm sure.
How did your appts go this month?
Kathy

I had my follow-up appt with my RO Jan13/12, he will be the one following me for the next 5 years. Canadian health care is universal so it's basic, no scopes, no full body PET scans. I will get a H&N contrast CT in March and then 3 months later to see if the residual changes, neck dissection if necessary; annual chest x-rays. My RO was quite optimistic and said there is no reason why I shouldn't think I'll live another 40y when my wife asked about 5y survival. He is confident the small residual sliver of node is scar tissue and says residuals are common.

I am positive but I am also an evidence-based person. PETs would have been better, even periodic scopes but they just don't do that here, it's not covered, and there are no second opinions unless you "fire" your specialist and one of their colleagues takes over. Even then with a new specialist, my RO said they don't go "searching" for problems which seems not pro-active when local recurrence or mets outside the H&N area is possible and a great concern for OCF patients, especially in the first few years. I mean I don't dislike my RO, he is a good specialist, accomplished and has published research articles; he is just following the Canadian system and protocols.

That said, I finished Dec12/11 and I feel pretty good right now. In fact I think I am on the better side of most being only 6 weeks out. The skin on my neck is completely healed, I have no mouth sores, my mouth is not always dry, I am eating almost anything but not dry foods often because it is extra work to chase with fluids. My taste is returning, sweet being the weakest. Stomach tube was removed a week ago. My throat is hurting less and less to swallow. I am 5lb under before this all started.
The lower back of my head is stubbly and I maintain a military haircut to blend the lack of hair. My hearing is slightly diminished probably from the Cisplatin. My energy level improves every few days and my sleep and nap patterns are approaching pre-diagnosis.

In general, physically, I feel better than I thought I would, I look great to my family and friends, however, mentally, my mind plays on me. As alluded above, the lack of follow-up PETs and scopes bothers me which makes me hypervigilant moreso of any new lump, pain, or symptom (I'm sure many of you are like that already). I could always cross the border and pay out of pocket for a PET. I fear recurrence, and I think about longterm rad issues. Ignorance is bliss and there are times I try to do things and not think about it at all.

Hi, Roger - I pm'd you on this. Check in My Stuff.

Roger - scopes should be a regular part of every check up. I am at PMH - every time I see a specialist teu scope me - and IV had 2 ct scans post treatment and wan another at the 1 years mark. You're right our system isn't proactive - sometimes you have to push!!! Good luck!