 
#45852 08-20-2005 10:47 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Micheal
Listen to ME, you will do this as long as you have to... you WILL be here in 4 years time saying it don't seem so bad, and giving advice to the newbies...
Sunshine... love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#45853 08-20-2005 11:37 AM | Joined: Jul 2005 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2005 Posts: 54 | Michael,
We felt the same way that first week. The next week was easier somehow - some of the chemo side effects subside and the adjustment to the Peg tube occurs. Hang in there. Trust. Scream if you like. It is really a tough thing you are doing. Don't beat yourself up. Just Be! We are connected and we are rooting for you guys.
Janet
Caregiver, Husband diagnosed 7/6/05 SCC left tonsil, T2N2bM0, Concurrent chemo/radiation begun 8/2/05 (Cisplatin). Received 2 cycles cisplatin, 38 radiation treatments. Completed course 9/27/05.
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#45854 08-20-2005 12:24 PM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2005 Posts: 624 | Michael --
Talk talk talk to your doctor and nurses about your issues -- nausea, first and foremost -- skin and mouth care for radiation (what are you doing?). There are suggestions for dealing with taste changes (to a point), especially those resulting from chemo. You need to try to be active as there are a lot of studies that moderate activity during cancer treatment 1, reduces fatigue and 2, produces a better outcome -- that is, you recover more quickly. This is NOT easy but try. Also, identify each symptom and get some help, you have to be your own advocate I think -- at least, that's been my experience going through several family members' serious illnesses, including my husband's current battle with HNC.
Gail
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!
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#45855 08-20-2005 12:29 PM | Joined: Apr 2005 Posts: 68 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2005 Posts: 68 | Michael
You CAN do this and you WILL do this. We are all behind you 100%.
Melissa
Mucoepidermoid carcinoma-intermediate grade. Removed 3/05. Additional surgery to get clean margins and selective neck dissection 4/05. 30 lymph nodes removed. All clear!!
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#45856 08-20-2005 01:47 PM | Joined: Jun 2005 Posts: 6 Member | | Member
Joined: Jun 2005 Posts: 6 | Hang in there Michael (you too Seth. We are both praying for you. We watch your posts daily.
Ken & Keith | | |
#45857 08-20-2005 02:16 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Michael,
There were many times along the way during my treatment when I felt that I couldn't get through the next X# of weeks -- however many there happened to be at that time. I found that I had to concentrate on what it took to get through the next 24 hours, each day at a time. I also found that I had to do as Gail said -- keep talking to my doctors and nurses about whatever was the biggest problem at that stage and see what they could do to help.
We're all here for you and know you can do it.
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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#45858 08-20-2005 02:53 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Michael, Right now I am visualizing you sitting on on the beach at sunset, listening to the waves lap the shore and waiting for the moon rise, with the libation of our choice in hand. Put yourself there in your mind. Keep going, we are pulling for you. 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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#45859 08-20-2005 04:09 PM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2005 Posts: 497 | Hows it going Michael? I see your name at the top of the board today so how are things? Check in please.  Blessings, Barb~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#45860 08-21-2005 02:21 AM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | I'm here. Barely :0
I think I feel a teeny bit better this morning than yesterday AM, but am not sure. Maybe I'm just getting used to some of the misery.
I've failed to mention before a couple other symptoms, which seemed minor at the time.
I had had on and off ringing in either ear for a few days now, and last night, it got so bad, it acutally work me up.
It seems to alternate between R & L, and usually I just try to ignore it by turning up the TV or something. I know it's a side effect of the Cispl, but for how long? Does it get worse? How do we know, or what can be done, before it get's permanent..?
The 2nd thing is that my hands are falling asleep. Both the R & L sometimes, with painful pins and needles.
Luckily, I have some of the Nurontin left and it helps, but should I notify someone or is this normal too?
Other than these two things, basically, I am just beat up.
I have ZERO energy. It takes me several minutes to get the energy together to just type on the laptop.
The neck and chin still feel like cardboard, and my mouth is so strange. It feels wierd and tastes awful.
I feel like I spent way too much time in the sun.
Opening my mouth is work and just trying to stay hydrated is a major challenge.
I've used the PEG a couple of times, and am going to try using it more for hydration. Water alone makes me sick, so we are experimenting with Gatoraide, etc.
That's it for now, thank you to everyone !! I've read each post and feel a little more able to meet this challenge with every encouraging word. Thank you!!
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.
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#45861 08-21-2005 07:28 AM | Joined: Jul 2005 Posts: 150 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jul 2005 Posts: 150 | Michael, Michael, Michael---you hang in there! We will do some major praying for you! You will handle it! From what I've learned here, this is all temporary--long temporary, but temporary!! Be strong, you will forge through this, you are strong and a wonderful spirit.
Minneapolis Shawna-
Dad Treated for T2N1M0 Tonsil Cancer August 2005. 35 IMRT radiation, 3 doses Cisplatin. Selective Modified Neck Dissection November.
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