| Joined: Feb 2013 Posts: 8 Member | OP Member Joined: Feb 2013 Posts: 8 | Hi Angels! I cannot sleep facing radiation treatments after successful surgery removed the node and primary BOT tumor? My swallowing has STILL not recovered 3 weeks post surgery and I am just now able to drink and eat a few items. I have dropped 15+ pounds so far. Besides that I will be awake throughout the radiation treeatments, I am very claustrophobic? Anyone have suggestions how to handle the FEAR? I am tired but afraid to sleep!! Thanks. Mark Cohen
Mark Cohen
| | | | 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 | I would suggest finding a therapist to help you deal with the anxiety. Ask at your treatment center if they have one who deals with cancer patients. To me it sounds like you need to take anxiety meds. Many here have used them to get thru this bad period, even some caregivers too.
Everyone is always afraid of the unknown. Thats normal, but its not normal to be paralyzed with fear. Try to think of this in a logical, clinical manner. Something like this.... you have cancer, you must get treated, you know it wont be easy, but it is mandatory to take care of this, Recovery will take a while, you will slowly return to your regular lifestyle. By breaking it down to the facts you know it may be easier for you to deal with. Stick to the facts and dont allow your mind to wander and play the "what if" game. Limit the time you spend thinking about all of this. Give yourself a set amount of time like 5 minutes when you start thinking of your situation then change the channel. If necessary, force yourself to think of something more productive and positive. Anxiety does NOT help you one bit, it is actually detrimental to your health.
Many have found it greatly helps them to be active members of the forum. By hanging around here you are among friends who understand what you are going thru. Many have felt the same way and been in similar situations. Its ok to vent. We get you!
Speak up today and make some calls to get the ball rolling to find help.
Best wishes!!! 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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Hi Mark,
To help with your anxiety, you might want to bring in a CD of your favorite music and get the radiation technicians to play it for you. Do you meditate? Even if you don't, you can try concentrating your mind by breathing in naturally and counting "one," and then breathing out and counting "two." It helps the body to relax. Sure, your mind will wander but it is okay. I use this technique when my mind is too busy and I can't fall asleep. You can do this during radiation too.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | It's natural to have fear, as ChristineB mentioned, and there are meds to help with anxiety. They do a simulation before the actual radiation to make a mask, set the markers for the radiation field. Maybe they can do additional "dry runs" until you are comfortable. IMRT, and assume you are having that, is open, and not enclosed like the PET, CT or MRI. It's just restrictive with the mask, which they can cut the plastic for the eyes, mouth, but each place is different. The first day is usually the hardest, and most who used anxiety medicationed, soon cease, after being more comfortable.
Some use meditation, mental imaging to help, and most places play music, and even may be able to bring your own cd's to play to help keep your mind occupied.
The weight loss can be a concern since most lose weight during radiation treatment, and can effect your recovery, and others, so you may want to see a nutritionist, speech and swallow therapist, if not already done, and most CCC have them on staff.
Good luck with everything.
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Mark � The Rad Tx may just go a lot better than you expect. Definitely ask about anxiety meds � it may make a lot of difference. The nurses and assistants in my son�s Rad Tx room were so very kind and helpful and distracted him with music, conversation and humor to help him through it. They even took a picture when he asked them to and if it helps to ease your mind, just click on this link to see it: http://webpages.charter.net/xila/paulrad.jpg Keep in touch and let us know how you are doing.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Feb 2013 Posts: 8 Member | OP Member Joined: Feb 2013 Posts: 8 | Thanks for the reasons to be "normally" scared but NOT paralyzed by FEAR! Yes, I did take ONE Klonipen (like Valium) before a PET scan last week and that helped. I also returned to work 3 weeks post neck and base of tongue surgery at UCLA. I had the one + node removed by incision and the base of tongue tumor removed robotically at the same time. Clear margins and no extracapsular spread from that node. Since I am a PERIODONTIST for 25 years, I know "too much" and have a wide medical network to confuse me even more. PS: HPV+ cancer. It appears to me the treatments are not written in stone for HPV+ as far as radiation+chemo or radiation alone since the main tumors are GONE? One of my surgeons even suggested that, IF the node had been 1cm smaller (was 3.5 cm), he would opt OUT of any post surgery treatment????? Then I see the radiation oncologist and he throws the book at me for chemo-radiation????? Thanks for any input! Mark Cohen in LA
Mark Cohen
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Hey, Mark regarding the radiation - my husband is a scientist - and had a pretty good idea what the linac therapy machine was doing to him. He found that radiation mask 'curiously comforting' (his words) because it kept him in correct position for the therapy.
The 'correct' treatment for this type of cancer is still not well defined as you have noted, and you will have to depend on the skill of your doctors, your own analysis, as well as your risk tolerence. As you well know as a medical professional, your ability to properly analyze a situation is compromised by emotional involvememnt. My suggestion on that count is mediation/breathe control. You must know some Bhuddists in LA - if you can get a crash course in mediation (as I did from my brother-in-law) it might be helpful. Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Feb 2013 Posts: 8 Member | OP Member Joined: Feb 2013 Posts: 8 | My spine surgeon brother/physician's oncologist from HIS hospital recommended NO chemo with the radiation based on my pathology report. What IS known combining, in MY case, carpoplatin x 6 +radiation x6 weeks? Every doc has their territory and there does not seem to be a consensus for post CLEAN surgery for HPV+16+ base of tongue cancer? I WANT to do the RIGHT treatment ONE time? Thanks Angels! Mark Cohen in LA
Mark Cohen
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Then hit it with both barrels. Chemo is not that bad add it if its suggested.
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: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2012 Posts: 214 Likes: 1 | Here is my take, If you have to get rads, I would get the chemo. Chemo sucks but it has shown to help. Curing first time is most important. I am un aware of any serious long term down sides to chemo, so you are trading, short term pain and suffering for less chance of reoccurance. HPV or non HPV this is still a deadly disease. Now if you don't need rads, that's a different situation. Rads always have long term QOL issues. Remember, it is always YOUR choice, Doc's just administer the treatment. If you don't agree with them, go somewhere else!
Hockey Dad 43, No smoke, Small BOT HPV+16 8/30/12 Biopsy found SCC in Lymph node (removed) 9/19 DX 4a T1N2aM0 10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15) PEG tube in 11/7. Out 1/4, Back at work 2/4/13 PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | I agree with getting the chemo concurrent with the rads, The rads create by far the most direct and collateral damage. As the platimum based chemos are radiosensitizers that improve the effectiveness of the rads, I am not sure if the concurrent treatment creates more side-effects than just chemo alone.
My surgeon's matra is to go aggressive as you do not want to see any recurrence. Your first trip through offers the best treatment outcomes.
Good luck Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Not really disagreeing about having chemo, but for me, it was 10x worse than rads, and that's an understatement. I will never fully recover from it, and will never underestimate it again, like I initially did. Even still, I had chemo my last treatment, and weighed the risks with the "light chemo" lol. Light was another joke, I had to buy a shower seat, and use a walker again due to the weakness, neuropathy, hospitalized for hydration, and blood transfusion. For my 2nd and 3rd recurrence, my doctor would not do chemo, said it would have killed me.
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Hi Paul,
As we all know the mantra, YMWV - Your Mileage Will Vary, so each person and each situation creates a unique outcome; even same person, same treatment may experience different outcomes.
I only state what I generally observe and that is far fewer get away unscathed from the harsh beam of the rad gun while the side effects generally are less from chemo.
No biting please, Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Don, I didn't even see your post when I was writing, and was not responding to you. I know everyone is different, and a number voiced chemo to be less a concern basically, no problem, and voiced my opinion, and I'm one that doesn't agree, that's all, and living proof. Most who went through what I don't survive, and neither was I expected, so there may not be that many around to say anything about chemo like i will for a number of reasons. These are some of the ailments I had suffered from chemo: All fingernails, toenails came off, burns on hands, face & inside mouth, paralyzed fro the waist down, abdominal pain, septic shock, sepsis, respiratory failure, pulmonary collapse, pulmonary congestion, intestinal disease, excisional debriment of wound or burn, disseminated candidiasis, unspecified septicemia, periumbilical abdominal pain, hypotension, drug induced netropenia, urinary tract disease, pleural effusion, hepatomegaly, gastric dysfunction, gallbladder disease, ulcerative colitis, pneumonia, cardiomegly, unspecified volume depletion, low potassium, kidney disease, hyposmolality, nutrional marasmus, debility, dysphaigia, phlebitis, systemic inflammatory response, syndrome, other erythematosquamous dermatosis, ulcerative gastrointestinal mucocitis, antineoplastic immuno supprs adverse effect, anemia, iron meatbolsim disorder, shortness of breath, localized inflammatory process whole body, unspecified infection central venous line, critical illness myopathy, brain ishemia, other ascites, joint pain, cellultis, mononeurotis, gait abnormality, pressure ulcer, rhinoschleroma, conjuntivitis, diarreah, nausea, hypovolemia, blood transfusions, renal failure, low potossium, acidosis, leukocotosis, C-diff. Btw, I like your sign off, don't bite
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | you missed one side effect - you grew fangs and yap like a chiwawa. :-) oh sorry - that is two, yes I can count
Last edited by donfoo; 03-16-2013 02:33 PM.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | That's ok. I paid my dues. You still have a long way to go, and hopefully you will not grow any fangs
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: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Hi Mark
My Alex suffered dreadful anxiety before each new treatment because he didn't know what was coming. Immediately afterward, he was all sweetness and light because the treatment was NEVER as bad as he imagined.
Remember that the radiation therapy itself does not hurt and it will hopefully be a couple of weeks or more before you start to feel the effects of ulcers and burns. It comes on gradually so you can manage it with pain killers and special mouthwashes.
The only thing you need to deal with is the mask. Other posters have covered the use of anti-anxiety medication, self meditation techniques etc so I will not repeat.
Alex found that imagining those radiation beams blasting the cancer actually made him feel like he was doing something which caused him to almost look forward to the treatment. He actually fretted when the machine broke down (which it did often) and there was a chance he wouldn't get radiation that day. Even the mouth ulcers which developed around week 3 were seen by Alex as a sign the treatment was working. Once he was comfortable and familiar with the routine he played a game with the machine, predicting where it would be when he opened his eyes.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Hi, Mark,
My husband had significant anxiety regarding rads and ATIVAN was prescribed for that. He took 2 pills before we left the house. By the time he was ready to get bolted down he was very relaxed and even slept a bit. Do what you have to, to get through it.
All the 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: Dec 2012 Posts: 14 Member | Member Joined: Dec 2012 Posts: 14 | The rad staff has been just wonderful! Make an appointment with the cancer center and meet the nurses, doctors, techs, nutritionist...etc.. We found that since they have been thru this they know what the process/outcomes are. Plus they have a magic closet, so can get you samples of products so you don't have to buy from the drugstore and have it not work out. Chemo was recommended to be given early in the week so that it was more effective with rad.
Joanna - caregiver (spouse) Init bio 11/12, gloss/neck dis 12/12, rad/cisplatin - 6 wks 2/13
"The most important thing is to keep the most important thing, the most important thing."
| | | | Joined: Mar 2013 Posts: 2 Member | Member Joined: Mar 2013 Posts: 2 | Mark
I have had 14 treatments of RT. I have the same issues. Actually I have 3 demons. I cannot sit still, I am claustrophobic and I have gag reflex. They stick a tongue depresser in my mouth to keep my tongue down. My radiation oncologist prescribed lorazepam 1mg for the anxiety. I took it 1 hour before treatment and it worked like a charm. I stopped taking it after 7 treatments. Hope this helps | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | [quote=PaulB]That's ok. I paid my dues. [/quote]
Paul, you've paid dues for the entire club. I salute you.
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
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