Kent!

surgery and me
Mick- having already gone thru a 5-place biopsy Op., and Ops. for both the feeding tube and Port- I was the one who brought-up the subject of surgery with my Oto/ENT, thinking that removal of my two tumors was the logical way to go. He told me he could do the Op., but advised me he wanted to take another route- to let the chemo and rad regime they put me thru take care of all issues. The upper tumor was clearly lymph, and the lower tumor was near to my thyroid. He told me the results of chemo and rad, in combination, were so impressive in testing, that he thought that route was the wisest to take.

By the third week of treatment I could detect that the two tumors were shrinking, Mick, and by the end of the second 4-day chemo session those tumors were barely in evidence.
My treatment differs from all others, here: 34 rads, while getting chemo via pumps for two 4-day 24/7 sessions in weeks #1 and #4.

week#1) on day-one, the chemo pumps of Cisplatin and Flourouracil were hooked into my Port, and I went thru my first rad, as I did on the following weekdays. Friday, my chemo pumps were unhooked, then I went thru my 5th rad session. My mouth became a trainwreck over the following 48+ hours.

week #2and #3)rads only, with the morph and ice being all I was capable of ingesting thru my mouth, starting on Tuesday of week #2. No morph in #3- chopped-up Vicodin and Xanax.

week#4)back with the chemo pumps, and still going thru the rads.

week#5)too sick to be capable of going thru the rads- and the gals in rad reacted in a way that told me they knew I would be too sick. Back with the morph.

week #6)no rads- in the hospital- fever spiking over 101, and in need of extraordinary antibiotic infusions, along with morph and ice getting me thru it. Towards the end of this week, in the hospital, I did turn the corner- and my progress in recovery saw no setbacks.

weeks #7 and #8)last of the rads, and end of treatment.

Of note: my use of the feeding tube began at the end of week#1, and continued as my only means of getting nutrition to the end of week#8. And there were 4 weeks of only morph and ice, total.

As for what radiation I was given, Mick- full head and neck= 20 places/session got zapped with the rads, including all areas of the nasal, oral/pharynx, as well as the neck.

My saliva glands were impacted, bigtime, Mick, but that's the way it is with all of us. The only thing my Dr. removed were the biopsy samples. My Dr. practices in the Quad Cities, and has direct ties to the University of Iowa, which claims to be the second-best in the nation when it comes to head and neck. I have no opinion of whether or not that is true, but I do know they do the 14-15 hour Ops. that involve disfigurement for head and neck, which a co-worker's stepfather had to endure (and has- with great success).

Mick, the logic of removal seems obvious, but my Oto said the chemo and rad they would put me thru should take care of/kill the cancer. And, I'm a 14-month survivor, now. All I can do is suggest you ask your Drs. about the course of treatment done to me, and if it would be possible/adviseable for you. Way I see it- the Primary is what needs to be removed, but they still can't find mine, so they didn't remove anything. Have they found your Primary?

kcass

micktissue said:

Thanks Kent.
They have not
Thanks Kent.

They have not found the primary, but they are also doing a random biopsy via endoscopy - nasopharynx, base of tongue, etc., all the sites where this may have originated - with the selective neck dissection. If they can find the primary, then the radiation target volume will be small and the side effects less. If they cannot find the primary, well I don't have to tell you what that means in terms of rads.

I am of two minds about radiochemotherapy. My body seems to have removed the primary. I think that means my immune system is functioning pretty well. If they kill my immune system with drugs and rads, wont that put me at greater risk of recurrence? That is what some alternative modalities claim.

Yet, I want the best chance at surviving this and I know a lot of people who would not be here without the 'standard treatment' including my mother (breast) and my brother (lymphoma). My father (lung, liver) was the one who did not have treatments and did not stand a chance (very advanced and he just gave up).

I'm going to be asking a lot of questions at the tumor board Thursday about the benefits to what they want to do and any alternative modalities. Right now I think the proposed treatment is based on anecdote, or so says my surgeon, as we are such a small subset of cancers (no primary) that there is little in the way of empirical study to come up with a standard treatment, hence the difference in our treatments.

Argh. I'll let you know what comes of the tumor board then will be offline at the weekend post-operatively. I'll be back online hopefully by Sunday.

Warmly,

Mick

second biopsy
Mick- did not mention that they did do a second biopsy, ordered by the Rad Dr., a week before the start of my treatment. She talked to my Oto, and he did the biopsy. A very minor outpatient thing, and the result did come back negative, so it's almost like it didn't happen, to me. Not even sure where the sample was taken, but I think it mighta been in my nasal/sinus area. The purpose was a last-ditch effort to find the Primary- in hopes that it would spare me of the full head and neck rads.

As for your immune system with the chemo and rads going-on: as stated, I spent four days in the hospital in week #6, with my temp spiking over 101, and a whole lot more going-on. ER Dr. told me I was in a battle I could not win without the antibiotics they could give me via the Port with a stay in the hospital. Obviously, my immune system had broken-down to the extent it was losing that battle. Took 1 1/2 days in the hospital before I noticed a change for the better, and it did turn around for me at a fast pace. BUT I MUST NOTE: my immune system was coping rather well with the early deterioration of my mouth, with both chemo and rads in play; and, towards the end, my immune system was functioning okay during my last two weeks of rads- I made progress during those weeks of only getting rads, with the chemo poisons becoming lessened within me. The body is an amazing physical structure, Mick. For me, it was the combo of chemo and rads that took me to the edge. Rads, alone, were not that big of a deal. But that's just me. Others have spoken to the contrary.

Good idea- asking a lot of questions about the proposed treatment. Go with what you think is right for you. Make it your choice, and then go with it- and with confidence.

Believe.

kcass

Hondo said:

Kent

I am worried about Jestawomen She has not posted anything or responded to any of my e-mails for a good while now, I hope everything is OK

Jestawoman
I don't know what to say, Hondo. Her Brother was having difficulty, you know. At best- maybe her computer's down. Can only hope that's what it is. And all we can do is Pray, my Brother, and do whatever we can to reach out to help in guidance. Not all battles that are fought can be won. If a battle has been lost, we can trust that there was God's peace at the end of that battle, and all is right. Fortunately, few battles are lost now-a-days, thanks to modern med and the Lord. Still, there is a peace that can be found...

Believe.

kcass

Hondo said:

Kent
You are right my brother, but I can’t help but feeling this heavy burden for her and her brother. I will keep praying asking God to be with them

the burden
That burden is shared by you, with you-know-who. The Might of Prayer is all anyone can ask of even the best of those who care, which is you, Hondo. Nothing more than that, with Belief, is possible. We know from real experience what we do know to be fact. Pray, and...

Believe, as you do.

kcass