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#46102 11-07-2005 02:26 AM
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Michael, sounds to me like you are doing wonderful! Truly. You are way ahead of where I was at that point in time. I stopped radiation end of August and at Thanksgiving I still was only trying to get some mashed potatoes down. My back hurt a lot and I had the same scary thoughts, however, the more active I got, the better it was.
You know I will be praying for you Wednesday. I am sure you will do fine......Take Care and let us know.....Love, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#46103 11-07-2005 04:08 AM
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Good going, Michael !!

Sounds as if you and Barry are about on the same track -- his energy is about 80% back (recall he is 30 years older than you, hee-hee) and we have been out birdwatching every day in last week except one rainy day; he's been mowing the lawn and also, doing yard work. Sense of taste is almost all back and in fact, never really went away completely (which was due to the tomo avoiding front part of tongue). He does still have some pain (when eating) where he had the tonsillectomy and in fact, tomorrow when he goes in for his first check-up and a swallowing test we will ask them to look and see what is happening -- probably an unhealed ulcer or sore. This is not unusual, we are told. He is still using pain-killers to eat so he can take in 2100+ calories a day. Needs to regain about 10 pounds.

Barry has never had any serious phelgm except when he had the pneumonia, and what he had is also virtually gone. The Mucinex went back into the medicine cabinet over a week ago. He does get a bit of a dry mouth overnight but not a real problem, and nothing during the day.

So it is apparent that chemoradiation is not always completely debilitating.

Our medical onc told him to start all his regular anti-oxidants etc. about 2 weeks out from treatment so he is taking E, D, etc. with the doctor's blessings.

Good luck with your check-up, and wish Barry luck with his!

Best, Gail and Barry


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#46104 11-07-2005 06:52 AM
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Hi Carol, thanks for the loving words!!

Gail, it's also great to hear from you everytime.

I feel like Barry and I are kindred spirits although we have never met.

I too feel "good" overall, and compared to how so many others on this board have suffered I almost feel a little guilty that the side effects were not more deilitating or longer lasting...but I still have my "issues"...(not the least of which is feeling like I have a baby grand piano hanging over my head 24/7).

But, we all have to face the terror and hopefully Barry and I will continue to be among the "lucky ones" :-)

Wish him my very best...and I'll keep everyone posted on my check-up too.


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#46105 11-07-2005 04:11 PM
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Michael, You are doing sooo well that I suggest you go back and read your posts to this site from the beginning- my hunch is that it will give you a new meaning to the word "Thanksgiving". Hope you celebrate the day with lots of good food AND good vibes. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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#46106 11-08-2005 05:24 AM
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Thanks Amy...You're so right!!

How is John doing?

Today, I woke up with a "cold" I guess...mild fever, runny nose, stuffed up nose (at the same time, weird huh?), and kinda achy (sp?).

I'm just gonna relax today 'cause I need to be well enough to travel to NY on Weds night.

Other than that, I feel good.

The pain in the tonsil (site) area is still there, and I will mention it to the Docs. I'm thinking it may also be related (like Gail said about Barry above) to the reduced saliva maybe.

Seth's Birthday was yesterday and we had a nice dinner in our fancy-schmancy restuarant here, and besides not being able to have wine (it tastes and feels like rubbing alchohol, YUK!) it was basically a normal meal!!

I eat slower now (a good thing) and smaller portions (a great thing!), but more or less getting on track to "my new normal".

Thanks again for the support...

I'll be especially thankful when (if:() I get the "all clear" from the Docs!

- Michael


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#46107 11-08-2005 06:44 AM
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Michael,
You have always had such a great attitude and I am very happy that you are doing so well. My treatment ended around Labor Day, and all that I remember having for nutrition the following Thanksgiving was a few cans of formula in my feeding tube.

I can drink a beer or a weak scotch and water but I don't think that I will ever like the taste or burning feel of wine again.

Take care,
Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
#46108 11-08-2005 07:25 AM
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Hi Michael,
Glad you are doing so well. I think you should print off your post with all the +'s and -'s and take it to NY with you. That way you won't forget to tell the doc anything. Try to get the name of a doc in CA that you can call or see when 'things' are bothering you. It might help with the anxiety. Have a good trip and here's hoping ofr a perfect checkup.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#46109 11-10-2005 01:31 PM
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We are in NY...Landed at 6:00 AM this morning, and went straight to the Dr's appt at Sloan.

Nothing surprising.

Basically he did a fair exam and said everything looks ok.

He checked the "site" and said "...looks clean and good...I don't see any cancer..." smile

Looked me over pretty good...he and the entire staff were amazed at my transformation from just over a month ago when I was a walking (crawling) zombie.

Asked all the basic questions and of course they took vitals (all normal despite my slightly lingering 'cold'). {stuffy head, dry mouth, general blah}

I didn't sleep on the flight, so I was not exactly bright eyed and bushy tailed, but none the less the Dr said he thought I had made a nice recovery.

I reviewed the list of items with him and the only 'big issue" is the giant white elephant in the room. (not me, I lost 60 pounds!!! :p ) No, the elephant of course, is the threat of recurrance.

He is fairly straight forward about this possibility and seems to think there is always a "good chance"...he says that RO's and ENT's might not tell a patient this, but he's the "one who has to deal with the patient when it comes back" so he knows the reality is it can, and many times does.

He also said something which surprised me. We were talking in general about metastisis and discussed what happens if it spreads to the lungs. He virtually said that if it spreads below the clavical that there's really nothing that can be done. With all the trials, etc. going on, I would think that on the cutting edge there has to be some "hope" for those that have it spread to the lungs, etc.

Anyway, he did a scope and inspected me over pretty good...said all looks clear!!!!

No CT or PET right now (too soon after tx), No blood work etc for now.

Got a referral to a friend of his from UCSF, and after all the great things I've heard from people on here, I will likely resume monthly checkups with them for a while since a monthly trip to NY would be exhausting (not to mention expensive!) smile

It's only about 3 hours from our place, so its much more manageable.

The Dr had a fellow ENT look over my neck incisions and discuss the fact that they reopened and aren't really healing. The ENT seemed to dismiss this as no cause for major concern and said to stop picking at them and use bacitratian (sp?).

So, that's the news! Good news I guess, huh?

The first of hopefully dozens of clean checkups!

Well...Seth and I are off to dinner at one of our NY favorites we missed during my tx...

Hope everyone here is doing well.


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#46110 11-10-2005 03:19 PM
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Great report Michael and Happy Happy Thanksgiving laugh Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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#46111 11-10-2005 03:27 PM
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Michael,

Congratulations on your clear results -- hopefully this checkup will be the start of a good trend!

Enjoy NYC now that you can get some time to yourself.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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