| | Joined: Dec 2012 Posts: 26 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 26 | This afternoon I go for my first IMRT. I guess I'm not too concerned about today it sounds from many of the stories I've been told that the first "few" weeks may not be so bad. I have developed a rash over the area near my ear where the neck dissection scar starts - strangely enough I think it might be a reaction to colase, which I've been taking since last week to help things along as I was still taking a little Roxicet for the belly pain from my feeding tube installation. I was getting all sorts of stomach cramping and somehow I didn't connect it. Goodness knows. Abyway I just wanted to introduce myself as I begin this journey.
SCC Started in the right tonsil they think, T1N2bM1
HPV+
Lots of nodes involved including some near the carotid - didn't come out during neck dissection
Distant Met's - one in the mediastinum, some suspicious stuff in the lungs
Radiation 70 Gy in 35 fraction
Cisplatin - 3
Stereotactic rad to the mediastinum
Clean PET Apr 13
Clean PET Aug 13
Clean PET Dec 13
Clean CT with contrast Mar 14
Clean CT with contrast Sept 14
Clean CT with contrast Feb 15
| | | | | Joined: Oct 2012 Posts: 118 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2012 Posts: 118 | Hello and Welcome,
It would be helpful if you could let everyone know by way of your profile what kind of cancer you have and what your tx plan is. So sorry you have to be here but it is a good place to gather knowledge and learn from the experience of others. It has helped me immensely.
As for the constipation ask the doc for an rx of lactulose. That really helped my husband. Also, since you are still swallowing, OTC Magnesium supplement will do the trick. Hope that helps.
Bette/CG to husband Reggie 66
dx 1: SCC Soft Palate (12/06)
tx: chemo and rad
dx 2: SCC 6 cm tum rt. vocal chord (12/09)
tx: total laryngectomy with stoma, 2 nodes
dx 3: SCC 4 cm tum BOT (10/16/12)
Tx: partial gloss w/ mod deck dis 4 nodes incl. part. pharyngectomy
| | | | | 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! You will find lots of info and support to help get you thru your treatments.
The feeding tube can be a bit tricky to learn the ins and outs of it. There are many little tricks that can make using it much easier. By having it now you will have lots of time to practice with it before its needed.
Best wishes with your treatments!!!
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  | | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hi Waldeau and welcome..
Good luck on rads today - you should be okay for a bit. Re the rash - have it looked at by your surgeon ASAP. I don't know if you had nodes involved or not - but I had to see my dr post surgery and pointed out something to him - he said no that doesn't concern me, now if it was a rash I would be worried. Also a friend had a rash on her neck in the area of her dissection and her dr. Had to deal with it. Definitely have it looked at - it could very well be a reaction to meds but better safe than sorry.
take care
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Best of luck, Tell your doctors about the rash on the surgery site. Any chemo?
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Jul 2009 Posts: 1,409 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 Likes: 1 | Waldeau, my thoughts are with you. Rads as you know are a tough road but you have a good attitude going in. As many here will tell you, you need to really baby yourself during this process and not think you're going to be able to conduct business as usual. I found it completely enervating and by the final weeks it was all I could do limp out to the ride and come home and back to bed. But with eyes on the prize you'll do fine.
Keep us posted, ask us any questions, and courage!
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Dec 2012 Posts: 26 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 26 | Bette,
Thanks - I'm such a newb! I added it let's see if it shows up. SCC starting in my right tonsil (or so they think). Lots of nodes on the rt side involved to but too close to the carotid to take them all out during neck dissection. As for distant mets - the jury's still out - I should get the news this week. Plan is 70 Gy of rad in 35 fraction, either 3 or 7 doses of cisplatin - they're still making up my mind.
Waldeau
SCC Started in the right tonsil they think, T1N2bM1
HPV+
Lots of nodes involved including some near the carotid - didn't come out during neck dissection
Distant Met's - one in the mediastinum, some suspicious stuff in the lungs
Radiation 70 Gy in 35 fraction
Cisplatin - 3
Stereotactic rad to the mediastinum
Clean PET Apr 13
Clean PET Aug 13
Clean PET Dec 13
Clean CT with contrast Mar 14
Clean CT with contrast Sept 14
Clean CT with contrast Feb 15
| | | | | Joined: Dec 2012 Posts: 26 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 26 | Thanks David2! And mine are with you.
SCC Started in the right tonsil they think, T1N2bM1
HPV+
Lots of nodes involved including some near the carotid - didn't come out during neck dissection
Distant Met's - one in the mediastinum, some suspicious stuff in the lungs
Radiation 70 Gy in 35 fraction
Cisplatin - 3
Stereotactic rad to the mediastinum
Clean PET Apr 13
Clean PET Aug 13
Clean PET Dec 13
Clean CT with contrast Mar 14
Clean CT with contrast Sept 14
Clean CT with contrast Feb 15
| | | | | Joined: Dec 2012 Posts: 26 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 26 | Thanks Cheryl! I had them look at it today before the rad and they gave me some steroid cream.
SCC Started in the right tonsil they think, T1N2bM1
HPV+
Lots of nodes involved including some near the carotid - didn't come out during neck dissection
Distant Met's - one in the mediastinum, some suspicious stuff in the lungs
Radiation 70 Gy in 35 fraction
Cisplatin - 3
Stereotactic rad to the mediastinum
Clean PET Apr 13
Clean PET Aug 13
Clean PET Dec 13
Clean CT with contrast Mar 14
Clean CT with contrast Sept 14
Clean CT with contrast Feb 15
| | | | | Joined: Dec 2012 Posts: 26 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 26 |
SCC Started in the right tonsil they think, T1N2bM1
HPV+
Lots of nodes involved including some near the carotid - didn't come out during neck dissection
Distant Met's - one in the mediastinum, some suspicious stuff in the lungs
Radiation 70 Gy in 35 fraction
Cisplatin - 3
Stereotactic rad to the mediastinum
Clean PET Apr 13
Clean PET Aug 13
Clean PET Dec 13
Clean CT with contrast Mar 14
Clean CT with contrast Sept 14
Clean CT with contrast Feb 15
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