| | Joined: Mar 2011 Posts: 130 Likes: 3 Senior Member (100+ posts) |  Senior Member (100+ posts)
Joined: Mar 2011 Posts: 130 Likes: 3 | I'm praying for you Cheryl. Please try to remember not to worry too much (yeah right. I think you're awesome and don't forget that we are in this together.
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | OP "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Thanks - I'm in Toronto at one of the top 2 hospitals in Canada - it is a CC - princess Margaret. My SO is amazing - this is my RO that's causing me stress. He said if there is still something there the radiation will take care of it. I'm okay with that just upset in that I feel I can't truly trust my RO - I know he probably has scads of patients - but he should know who he's dealing with before he comes into the room and be on his game. I shouldn't have to push him up to that level... I am going to check him out and possibly see about being assigned another RO... Thanks so much for your reply! Feel well!!!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | OP "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Thanks @mainewill same to you. It usually takes me a day to process it all. Then I move on. I'm ok today - but am considering a different RO. The problem with this dr. Is that he is a linear thinker. And not well prepared when he sees me . Ugh . Take care, day 7-8 for you?
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Mar 2011 Posts: 130 Likes: 3 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2011 Posts: 130 Likes: 3 | Day 7. Woke up this morning to a VERY funny tasting bagel.
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | OP "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Oh... Ugh... I had unexciting porridge... An egg which I haven't had and a muffin. A little queasy from the chemo... Other than that no problems. They are springing me in an hour I go to rads and then home... Gonna walk my dog and hit the gym... Apparently being active helps the effectiveness of the radiation.
Getting that extra blast to my right neck as of today... I'm prepared for side effects so worse I suppose won't matter - since I am already expecting the worst. Are you doing the chemo too? That can also mess up your taste buds!
Have a good day despite the funky tasting food.
Healing vibes to you and truck on!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Feb 2011 Posts: 117 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2011 Posts: 117 | Cheryl: Actually getting a different doctor sounds like a good idea to me... I would pursue that...and remember to be the squeeky wheel. Hope you have a good day today without any side effects !
DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
| | | | | Joined: Mar 2011 Posts: 3 Member | | Member
Joined: Mar 2011 Posts: 3 | I too was told in my post-op appointment that I had nodes in my lungs. Thankfully, the DR and I were able to have a meaningful discussion. This indicated that traditionally, metastasis in the lungs was preceeded by near total involvement of the lymph system. Also, the scans pick up dense materials and excess pollution.
For me, I can point to my job as a major source of this pollution. I will be wearing a respirator when I deal with this from now on.
I believe that you will be ok. It seems that you are feisty and determined. Keep it up | | | | | Joined: Mar 2011 Posts: 130 Likes: 3 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2011 Posts: 130 Likes: 3 | I havn't started chemo yet because I can't get straight answers about the drugs they want to use. Taxol and Carboplatin. What kinds are they giving you?
Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | OP "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | cisplatin is my chemo of choice for now. what I gather carbo is an older version of cisplatin or the are very similar, and taxol is supposed to be used to treat many different kinds of cancer... did they explain the BL marker thing to you?
I am finally home... tired going to nap, walk mutt and go to the gym... gross weather here. UGh! SPRING HAS SPRUNG... but there is no reprieve from snow...
have a great day, and harrass people to decide about the chemo... sometimes you have to make noise.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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