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#50679 02-21-2004 08:33 AM
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I haven


Caregiver to Eric
Squamous Cell Carcinoma, L. Tonsil
Stage 3 (T2-N1-M0)
5 Years Cancer Free Now
#50680 02-21-2004 10:35 AM
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Hi Jack,
It is great to hear from you, I was just thinking about Eric and how he was doing. I entered a phase that things moved fairly slowly and I communicated far less to my local support group. It sounds like he is pretty much on track compared to how I responded. There is lots of room for improvements yet to come.

I too am a nice svelt 140 lbs and liking it - People pay big bucks to get to this weight! I might even write a book cool The Dr. A. rad/chemo diet!

Eric must be doing pretty good to be on a 3 month cycle - I am still on 2 and will be through December.

Getting back into the old interactions is great! Making fun of yourself is OK too.

Didn't Eric have IMRT? If so it can take 18 months or more for full salivary gland recovery (at least the ones that weren't fried). I am getting more saliva output all the time.

Prostate cancer is reportedly found in about 80% of all males who reach the age of 80. Typically it is a very slow growing cancer and never goes beyond the prostate capsule and most people outlive it. Non-typically it can pass beyond the prostate capsule and have serious consequences. Interesting, IMRT was originally developed for treating prostate cancer. The jury is still out on screening techniques. In the late eighties they were proposing a ultrasound exam with a transrectal probe (ouch). The death rate from this screening went up because they were operating on some who probably didin't really need the surgery. They are trying sort this out - they went from having very little data to a ton of data.

There has been a lot of pressure on the FDA and congress to regulate mammmography quality assurance because of the concern for unneccessary procedures and their associated risks. They are still working this through with prostate screening.

There is NOTHING to like about cancer but the life experience can be priceless.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#50681 02-21-2004 02:43 PM
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Jack, thank you so much for taking the time to provide such a thorough update. I think it is very, very important for new people who come here to also read about patients who have recovered and the time that can entail. As my grandmother used to say, you have earned another star in your crown. This one is for the care and strength you gave your friend. And please tell Eric that Gary is correct in that it takes time for the saliva to return after IMRT, if that is what he had. Today, almost 18 months out from rad/chemo, I, too, can spit at will, but it took some time to get to that point.

#50682 02-21-2004 04:39 PM
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Yes I know this is an oral cancer board, but someone else brought this up so I want to comment on it. This may or may not be of interest to the guys out there, and the issue of prostate cancer, which is way common in the elderly. Patients frequently outlive the disease and die of something else age related before the cancer because in the most common type it moves very slowly. (The other will take you down like a linebacker before you know it, so don't accept generalizations about what you have.) But the issue of the ability to get an erection after surgery may be changing soon, and no one is happier about that than yours truly. OK, let's get all the jokes out of the way first. Who cares if a 75-85 year old guy can "sport wood", still has "lead in his pencil," etc? ME, cause sex is one of the great joys of life and my idol in this respect is an 84 year old friend, who recently got remarried after being a widower for a decade. He told me in private that the sex was great. I almost fell over at the thought


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#50683 02-21-2004 06:04 PM
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Thanks for all the responses... Brian feel free to hijack and compliment anytime. I will pass this on to my Dad.

I wanted to clarify that Eric did not have IMRT. We looked into it, but given the area the radiation oncologist wanted to cover they didn't believe IMRT would be the most effective choice. Eric took Amisfostine and completed about 90% of the suggested doses. This was prescribed to potentially help him regain some saliva. I keep telling him it is early yet, and I will let people know if some saliva returns. So far nothing has happened, but I suspect until a few years have gone by he really won't know the results.

Anyway it was wonderful to read the replies and hear from some of you who have helped so much. And as Joanna said, for the benefit of those reading along, it does get better. It is just a really long, slow recovery process. Six month post radiation I can truthfully say Eric's cancer is still a significant part of his life but is ISN'T his life anymore. Somewhere in the last few months his life of friends, work, recreation, spirituality, etc. started to balance out the huge specter of cancer. From his diagnosis until a few months ago Eric's life was cancer. Fortunately that is changing and cancer is slowly taking a back seat to life again. It is a much better place to be than the dark days of radiation.


Caregiver to Eric
Squamous Cell Carcinoma, L. Tonsil
Stage 3 (T2-N1-M0)
5 Years Cancer Free Now
#50684 02-21-2004 06:56 PM
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Hi Jack....

I'm new on this board but I also wanted to say that you are an inspiration. Thank you so much for being such a good friend to Eric.

Khaja


Khaja
SCC Base of Tongue Stage IV. Diagnosed 12/02
#50685 02-21-2004 10:51 PM
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Brian - you STUD! wink


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#50686 02-22-2004 05:59 AM
Joined: Oct 2002
Posts: 546
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Jack,

Thank you so much for the update. It's good to hear that Eric is doing so well. He's lucky to have you for a friend. I wish your Dad well. Be sure to take care of yourself as you help your Dad get through his treatment. Caregiving takes a lot out of you and I'm sure you haven't yet fully recovered.

Rainbows & hugs, wink
Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
#50687 02-22-2004 06:46 AM
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Hi Jack,

Thanks for sharing such good news about Eric. It's always uplifting to hear of a member doing so well. Good luck with your Father. They are both lucky to have you as a caregiver.

Dan


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#50688 02-22-2004 07:31 AM
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Posts: 162
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Hi Jack,

I had amifostine injections as well and only missed two doses during my treatment. I'm not completely dry and never have been, but my syliva is still significantly depleated. My docs tell me that I will have to wait up to a year to see whether the amifostine has been any benefit. After that, they say, I got what I got.

Like your friend Eric, my best bud was my care-giver during my treatments. And from reading your story, my bud and I share a similar boisterous relationship. Coming from this side of such friendship I can tell you words will never be able to adequately express the importance and meaning of such a friendship. I'm not a religous person, but I'll say thank God for guys like you, among many others.

Thanks for sharing your story and best of luck to you, your buddy Eric and your Dad.

-Brett


Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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