| Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2009 Posts: 212 | Hi Angelia, Sorry you feels so down. This is the worst treatment. Everyone has given you some great ideas, I can only echo them. I was realy against taking pain meds ( in my old hippi days I would have jumped at the chance!) I did start taking morphine , maybe in my 4th week, maybe 5th. It did help, stopprd the pain, helped me sleep. I was affraid it would be difficult to stop and I would get hooked. By the end of treatment I had both fental patches and morephine.It only took about a month to get off the drugs and I honestly can say needed them. The two biggest side effects were I could not read, too spacey and got quite constipated.
Hang in there, we are all pulling for you
Steve
70 male, athlete...again SSC of undetermined orgin , early july 09 40 tx radiation, 8 chemo cisplatin and ebuterx finished TX in mid Sept 09 Clear at the 6 year mark! Back to swimming, biking and running! just a tad slower never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Re the medical pot. I was given some Marinol (sp?) which I was told was pot in a pill. $20 each BTW. I was excited even though I felt like crap. I thought OK a little buzz, the munchies, the feel good, that's just what I needed!!! WRONG....they did none of those things so if they offer it to you say NO THANKS unless they give you some freebies to try first.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | David,
Marinol is synthetic thc, not medical marijuana...totally different. It's like asking for real mayo and getting miracle whip...yuck
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | I didn't need any antidepressants but I did take a lot of pain meds. When I was in the hospital for 9 or 10 days for severe dehydration the morphine was a welcoming friend. When I first went in the hospital and they asked me how my pain was from 1 to 10--I would say 4 or 5, in no time, I learned 9's worked well for me...LOL.
Last edited by Ray1971; 12-05-2009 05:13 PM.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | | | Joined: Nov 2008 Posts: 20 Member | Member Joined: Nov 2008 Posts: 20 | Hi Angelia, I think the depression is very normal for what we have to go through with this lousy cancer. I, too, became very depressed and am still taking antidepressants and anti-anxiety meds, they are SO helpful and nothing to be ashamed of! Please ask for what you need, both in terms of the depression and the pain - I don't think I could have made it without the narcotics, I am so thankful I was "doped up" for much of the treatment!  Chin up, you can do it? Lucinda
Lucinda 52 y.o. no risk factors -dxed 11/10/09 w/ Right lateral tongue SCC 2cm, bilateral neck dissection with 3 nodes positve on right, Induction chemoTx followed by ChemoradioTx, last Tx 4/3/09, PET/CT 11/8/09 showed no sign of recurrence.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | DavidCPA
I'm with EricS on this. Marinol is a pathetic substitute for medical marijuana. Of course smoking is veboten for us oral cancer patients, but the Volcano vaporizer is one alternative albeit controversial. As a full disclaimer, I have to share that when my little brother was dying of AIDS related illness, medical marijuana at San Francisco General Hospital, it made a major difference in the quality of his final two weeks of life. It was such an astonishing difference for someone I loved that I cannot be objective in my evaluation. Not that Angelia needs this, but I am struck about how all cancer forums tiptoe around this issue. 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: Nov 2008 Posts: 20 Member | Member Joined: Nov 2008 Posts: 20 | Oops, meant to hit !, not ?
Chin up!! You can do it!!
Lucinda 52 y.o. no risk factors -dxed 11/10/09 w/ Right lateral tongue SCC 2cm, bilateral neck dissection with 3 nodes positve on right, Induction chemoTx followed by ChemoradioTx, last Tx 4/3/09, PET/CT 11/8/09 showed no sign of recurrence.
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I know I can do this. Here is it 3:00 AM and I woke up this morning to horrible throat pain. I have only had one week of treatment. This is not sounding very well. It hurts to swallow and just plain hurts. It happened overnight also. Anyway, I thanks for all your encouragment. I see my Dr. on Tuesday so I think I will be asking for some pain meds. I do have darvocet, but I want something stronger so I can sleep through this whole thing.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Angelia
Welcome to the early early early bird club. I had almost forgotten how I would wake up every night during TX between 1 or 4 am to take more Pain medicine. Even after TX, rather than toss & turn in bed, I'd just get up to read or else write in my journal for a couple of hours, then try and sleep on the couch. It was a milestone of recovery when I could sleep thru the night. Too bad, I had not discovered OCF the first time around. When the cancer came back, and the difficulty in sleeping returned (this time from choking on mucous), at least I could post on OCF those pre dawn hours. You can do this, we all have and there's no reason why you won't also. Still it is so hard, but trust us, it does pass. 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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Yes Angelia,
the early morning club or for me the never sleep club. One of many side effects of pain medication is restlessness and insomnia, more prominent as your tolerance grows as well. Usually I'd see Charm, Cookey and I online...good company really. If you are still feeling quite a bit of pain you may want to ask your dr for other options, fentanyl being the strongest.
Charm you did make a good point in the fact that most posters on this site tip toe around the medical marijuana options. I don't understand the taboo anymore really. I never did illegal drugs or drink in school due to athletics and even after competing was over for me I stuck to alcohol and had a negative view of marijuana.
Even a year after diagnosed with stage 4 cancer and all the way through tx and surgery I'd declined to try it, mostly out of ignorance yet I'd never "smoked" anyhing before and certainly wasn't going to start. Then my oldest brother, a chronic pain patient, introduced me to a vaporizer.
I had left my breakthrough meds at home and was experiencing pain and nausea...low and behold the vaporized "authentic" thc (not the marinol crap)eased my pain, settled my stomach, put me in a good mood, made me sleepy and extremely hungry. Um hello? Why the hell wasn't I allowed to have this during rads/chemo?
A drug, whose side effects are a blessing for cancer patients? Surely not!?! I've joined MPP.org (marijuana policy project) to help push medical marijuana laws in my state. I find it funny that our Dr's can push heavy opiods, benzo's, anti-anxiety/antidepressants, Ambien and a slew of other drugs with nasty side effects, yet vaporized (no carcinogens) marijuana is taboo. Blows me away.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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