| | Joined: Dec 2010 Posts: 291 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Dec 2010 Posts: 291 | Hi,
I started the week thinking I would have one more simulation, but instead:
1/19 began with the real thing, radiation to mouth and neck
Followed by two treatments the next day and one to end the week
This brought me to 4 treatments which my RO said was better to start with than only 2.
Yes, I disliked the mask, especially on Friday, but I think part of my hair got bunched up in back; they adjusted it & it was better.
I am slightly sore from radiation, noticed it especially along my neck scar line which the RO wanted to target.
Then, Friday evening I ended with chemo, Cisplatin, which is just a boost to the radiation. I was scared to death, the only one in the waiting room who did not have anyone with them.
When they said they were giving me a steroid IV first, I wanted to opt out. Taking prednisone makes me crazy. They also gave the anti-nausea drug via IV. (actually not sure which came first-steroid or anti-nausea) Getting the IV of all those was not too bad. My husband flew into the Houston airport just in time to pick me up at 9:15 pm after my treatment.
Saturday--Sunday am: Not so good. I only had to take one dose of anti-nausea combo (Atavan, Benadryl, Haldol)on Friday night and it was just cause I felt slightly nauseated and did not want it to get worse. This also let me sleep as I was riding high with the steroid until midnight. But Saturday, I noticed a definite effect on my radiated regions--more pain, etc. Also, by the end of the day I felt really constipated. I took docusate sulfate. Not much yet. I was not expecting this. I did have a what I think was a case of mild food poisoning last Tuesday, which gave me a few GI problems, but I felt good enough Wed, and thought it was cleared up by Friday morning. Plus I cannot seem to sleep very well, don't know if the steroid stuff would still be circulating? That would explain it. In desperation I found Power Yoga or something like that on TV and went through what I could with it. Some better with anxiety anyway.
What fun--not. Then I get to start again tomorrow. Sorry not to be Ms. Sunshine. I tell myself, it could be worse.
Anne O.
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
| | | | | 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 | Anne, Im sorry you have had a bad week. Its not going to be easy but you will get thru this. Looking back on it, I find myself thinking that it was one of the worst times of my life. Thats the honest truth, its a rough road. You are currently just beginning, it will gradually get more difficult as you get closer to finishing. Thats the most important thing, to finish your treatments. Do your very best to maintain a good level of hydration, 48+ oz water and 2500+ calories daily. The better your nutrition, the easier it will be for you to do this. Keep up eating as much as you possibly can and drink water daily even if its in a few sips at a time. Constipation is a side effect of this so keep an eye on it and take meds for it. A daily tablespoon of karo syrup will help.
You are correct, it could be much much worse! Many patients struggle with depression and take anti-depressants during treatment. Many also will need to see a therapist to help them with what they are going thru. Dont be ashamed if you need help, most people do.
We will be here for you during your treatments. Dont ever feel alone, we are here 24/7 and will help get you thru this.
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: 291 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Dec 2010 Posts: 291 | Christine,
Thanks for your post and being so supportive. I am not usually depressed. But it takes me maybe longer than some folks to "get used to--whatever", if you know what I mean. This week was full of surprises, which I guess--is not surprising:)
I wish I knew about the steroid IV, how long it will last. Judging by my feelings, the effects are still here.
Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Anne,
When one starts RT, it can look like it will take an eternity to finish. One thing that helped my husband was to mark each day off on the calendar. That way he could have a visual reference of accomplishment and of how many days were behind him. Also, constipation can also be treated with MiraLax. It has no taste and really worked for Clark. You can take more than one ducosate sodium in a day. Check the package. It is not a stimulant but a softener.
You have a rough road ahead but you are not alone. Many here have been there and will support you. Take one day at a time.
All my best-
Anita
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Anne, I'm sorry to hear about all you're going through. No question, it's a tough treatment and you're showing a lot of courage. Words at this point are merely that. We all know what it's like and our thoughts and hearts are with you.
D2
PS I found Compazine to be the best help for nausea, btw, better in my case than newer drugs like Zofran.
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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Feb 2005 Posts: 118 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2005 Posts: 118 Likes: 1 | Anne, I too am sorry for your difficult week. I know you will have some "Hey, I'm feeling pretty good" moments in your journey. Acknowledge and cherish and know that there will be more. I found that prednisone would wire me for two or three days and your body may be reacting in the same fashion. Anita suggested Miralax and that product has been good to me as needed over the past several years.
Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
| | | | | Joined: Jun 2010 Posts: 87 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2010 Posts: 87 | Hi Anne-
I am thinking about you! Sorry you had a bit of a rough week. Hopefully now that you know what to expect things will get easier--at least less stressful.
Miralax is a great product but often takes a couple of days to get results. Decreased activity level, pain meds, and decreased fluid intake can all contribute to constipation. The stool softener is good also-- you might want to just stay on a stool softener one to two times a day.
Glad your husband is there with you over the week-end.
Susan
Susan
Age 51, married with four kids age 11-18, 9/1/2010, Bx: high grade mucoepidermoid CA left sublingual gland.
10/8/2010, wide excision left floor of mouth, modified radical node dissection left neck.
T1N0M0. IMRT started 11/22.
Never smoked, light social drinker
Also happen to be ICU RN
| | | | | 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 | If you have a peg tube then take advantage of it by taking meds with it. Be careful not to crush and disolve any time release meds. I used the karo syrup mixed right in my feeding formula. I use a kangaroo pump to get my formula. The everyone is different saying is true, David likes the Compazine while I like the Zofran for nausea. The Compazine made me a nervous wreck, I paced back and forth. It was awful, I couldnt sit still. Just cuz it happened to me doesnt mean it will affect you like that. I wanted to let you know just in case you are having a reaction to anti-nausea meds instead of the steroids. I know steroids will stay in your system for a while. Hope this info is helpful to you. Best wishes for an easy upcoming week. Dont forget we are right here for you to lean on!
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Anne
The nice thing about OCF is nobody expects you to be little Ms Sunshine since we all know just how sh*tty this disease is both literally and figuratively. I found laxatives and stool softeners ineffective or inconvenient. Suppositories worked perfectly within 20 minutes of insertion.
All this will pass
Keep the Faith
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Anne,
I knew I would be able to catch up with you here. Sorry things are getting rough so soon.
I hope that your plans for help will be going into effect real soon, before things get more difficult.
Hang in there and some day this will all be a distant memory.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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