| | Joined: Apr 2015 Posts: 1 Member | OP  Member
Joined: Apr 2015 Posts: 1 | Well..as I have seen, this is not particularly a forum one wants to see himself in, but being as I have completed my walk 'into the light', I am interested in what to expect from here on out.
I was diagnosed with Squamous Cell Carcinoma (BOT) Feb 2013. My Oncologist wasted no time in scheduling my 1st PET scan, installing a port in my chest, beginning my Chemo and scheduling Radiation. At the end of 2013 he stated I was disease free (he would not use the term; In Remission), as he felt that meant the disease was halted instead of removed.
So I guess that suggest I have been cancer free for 18 months.
Have a few issues: Dysphagia, Xerostomia and weight loss which I am trying to resolve but�.when all is considered I quickly recognize: Life is Good.
But I have also become more aware of: Empathy as I have seen the other side, on the faces of those whom I became acquainted, in the Cancer Center.
I am not into Social Media or forums, so forgive me if I do not know the protocols related to these forums. Just looking for other thoughts and ideas.
| | | | | Joined: Mar 2015 Posts: 55 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2015 Posts: 55 | Hi, and welcome. I am also a recent member here, but found it on the day after my initial diagnosis rather than post-treatment like in your case. I begin treatments this Friday.
The folks here have been awesome. There is a wealth of information and experiences from other members, and they're all quite willing to share and eager to help. You've come to a great place.
Peter, age 62 at Dx
3/27/15 Dx T2N2aM0 Tonsilar P16+ G3 SCC
4/6/15 Full PET clear except for above
4/24/15 TOLM tonsillectomy/clear margins. Neck dissection 20 nodes (1 w/cancer & extracapsular extension)
5/28/15 PEG in
5/27 - 7/10/15 Daily Radiation to 66 units cumulative; Cisplatin weekly X 7
8/24/15 PEG out
9/24/15 Full body PET - N.E.D.
12/22/15 CT and physical exam. Continued clear.
3/11/16 Physical exam. Continued clear.
7/12/16 One year post-treatment! CT clear.
7/7/17 2 years post - still clear
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF! Im always happy to welcome another survivor, someone who has already been thru the war successfully.
As you are finding out, recover can take a loooonnnggg time! After everything your body has been thru, it takes a full 2 years before you are at your "new normal". Many patients see slight improvements in their sense of taste, dry mouth and fatigue until about 2 years post rads. Keep pushing higher calories and water intake for at least another 6 months to help bounce back. Daily shoot for at least 2500 calories, if trying to regain weight push for more like 3500 calories daily. Your water intake should be 48-64 oz daily. Adding high protein whey powder to your liquids will help with healing too. Weight gain can be tricky for most of us after going thru rads.
PS... I sent you a private message (PM). Look next to the "My Stuff" tab and click on the tiny flashing envelope. In the PM, there is a link which will quickly teach you the ins and outs of the forum and it has a list of abbreviations. Especially important is making your signature, detailed instructions are spelled out in the link too.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | |
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