Getting started...Next line of questions?

Skiffin16

j3rey said:

Question for John
Hi John.
I have a question for you. You said that you only had one lymph node involved so your med team opted against the neck dissection. How did they know that no other nodes were involved?
We are set for the neck dissection this week and are feeling anxious. It is my understanding that they will remove the involved node and several others to for biopsy to make sure there is no spread.
Thanks so much for sharing your experience. It is really helping to read posts from someone who has been through all of this.
Jen

j3rey and Kimba
I can only go on what I was told during diagnosis that only one node was involved, and they PET scan.

Like CajunEagle, we had quite similar treatments with exceptions.

My ENT was concerned with the location of the node being in close proximity to the carotid. He felt that that a dissection would be as an after action to the chemo and concurrent chemo/radiation if necessary. His thought, logic and experience would be to see what effects that the chemo and radiation had on the tumor. It would either dissolve it, reduce the size (being a less invasive surgery), or nothing to it. If it dissolved it great, if it reduced it, good less to remove and better odds of nothing else going on during surgery. I it didn't do anything then surgery was still an option.

During the second round of chemo, the tumor was reduced significantly, sometime during the third round it was gone and confirmed with a CT before I started the concurrent seven weeks of chemo/radiation. Although unfortunately it was advised that I should complete treatment and not stop. Knowing that the radiation was going to result in lifelong damage to some degree.

After the concurrent and a few months post treatment, the PET scan shown no signs of cancer, residual or tumor.

So at this point, I have just been having three month scans, which just recently moved to my next scan in August (six months) for a PET. If everyhting stays clean, I get my port removed next February.

I think the regime of treatments vary depending on facilities, doctors, etc... In talking with them at the time, it was kind of a toss up between which to do first, some (in the medical community) felt that chemo/radiation first then the bigger doses of chemo should come next. Mine felt that studies were more favorable (results wise) doing the larger doses of chemo first, then chemo/rads concurrent.

I've seen others that have done the neck dissections first, then either just radiation or concurrent chemo/radiation.

I can only speak of my experience which seems to have been a good choice and decisions by my doctors.

As for side effects, I don't think I had anything that bad in comparison to some. Yes I lost hair, my throat was tore up for seven weeks or so, mainly the latter part of the radiation and few weeks following. I never got sick, slightly de-hydrated once. I never had the thick mucous or phlegm like some. I did lose a lot of salivary function (though I have regained probably 80% of it back this last month or so). I lost most taste but have gained most back, just not as intense (it's my new normal). Although I haven't gained much back concerning a lot of sweets, which isn't really a bad thing. I had the Turkey Neck thing going on, but that's almost gone completely as well. I still have the Lhermitte thing (electric sensation when I put my chin to my chest), but that's mild.

I still do drink a beer now and then, and it tastes great..but tends to dry me out, so I only drink one or two beers a week if that.

Overall, I think I am very lucky and greatly blessed to have gone through what I have and still be in good shape. I'm 56, all of my blood counts and labs are back normal, GFR is normal, cholestrol, blood pressure and I'm not on any medication.

Also, I did not have the PEG, not by any decision on mine. My doctors whom I trust explicitely felt I didn't need it. I think a lot depends on where you are health, weight, mentally, and physically going in to this ordeal.

John

Skiffin16

Kent Cass said:

Jim
An excellent plan, Jim, going forward. Know you will find the experience rewarding.

John, cudoos to you and your wife, also. In regards to such as this, I have fallen far short. This forum is my one avenue to help others, so far. 55, and now working 51-hour/weeks, six days a week, my free time is pretty much none, especially with what is going-on with me and a little something called "sleep." I do commend you and your wife, John, for your good works. Truly.

kcass

Time
I hear you on available time Kass. Both Shelley (my wife) and I work 40 hour work weeks. That leaves only evenings or week-ends. By now you all know that I love to fish and do it nearly every Saturday weather permitting. Of course that also depends on my getting all of my "honey doos" and yard work out of the way during the week.

For the Arts in Medicine thing, it was on a Friday evening and only a block from where we work. So I went home first and took care of our two chocolate lab babies, then returned. A side benefit of that volunteer effort was that Disney gave you a one day park pass for volunteering. That ended up being a double benefit as when we went (this past Saturday) they let us upgrade to three more days for only $20.

The Relay4Life was actually a Team Relay that someone at work started and I joined in. It went from Friday evening six PM, until Saturday morning at nine AM. I mainly solicited donations (as everyone did) and did the survivors walk at six (Shelley and I). Then we hung out and helped in other ways.

Actually we did pretty well, I think team wise we collected $1700 between the seven members and of that I colleceted $395. Monies collected for the American Cancer Society.

John