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Joined: Jul 2009
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So much to comment on here... mainly though to answer your question, Anne, I was only on the 25 mcg Fentanyl and the Oxys. A lot of those last couple of weeks is kind of a haze to me right now, but I guess that combo was enough to handle things. I'm sure if I'd needed more my doc would have accomodated me; she's terrific and believes, rightly, that there's no reason to be in pain. That sounds like a sensible handout you were given!

As for the constipation, they did suggest stool softeners and suppositories and the like, but in the end (pun intended) the manual approach was the only real solution. Oh well.

Seda, early on I found that my nose was getting squashed by the damn mask. So the tech kindly cut out a hole for it. If a simple adjustment makes yours tolerable, that's great.

Hope things are improving for your husband, Anne, and for you, Seda!

D too



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 10 years all clear in 6/19 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Elianne Offline OP
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Thanks David2, we are getting there. Almost at the end of week 5 and he's still getting 4 shakes down every day.

Did anyone ever suggest lactulose for you? It seems to be the next step up after senokot and colace. We're giving it a try. Every doctor seems to have their own favourite method. smile

Gordon is now on the Fentanyl 50 patches and morphine (10 mg) 1X/hr. or as needed. It seems to be helping.

Anne



Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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I have been taking one or the other or both sometimes of percosets, vicadin, morphine 30 and oxycodone 5mgs sine June 09. I define the pain I have as existing in layers where one pain fades away it reveals another. Also with experiences like bone exposing biopsies, radiation ulcers, and pain from surgeries it seems like there is always some pain. I tell doctors I have been in continuous pain since June, and I insist on painmanagement / paliative care verses depending on doctors for pain analysis over time. Pain has a big psychological component that doctors may not get. Anyway, my point is that I am in a place where much of my pain is subsiding and when I go for periods of not taking prescribed pain meds I do not feel like I am experiencing any major or minor withdrawal symptoms.


Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
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Nibs, I hear you. Glad to read that the pain is subsiding. Man, it's a bitch ain't it?

Anne, never heard of lactulose. Wish I had back then! Great that Gordon's getting what he needs! And that it's doing the trick.

By my counting he should be nearly finished with radiation. That will be a major milestone! Please keep us posted on his progress.

D2


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 10 years all clear in 6/19 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Elianne Offline OP
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David2, Lactulose is the next laxative step up from the senokot/colace regimen. It seems to work fairly well. I'd never heard of it either before the MO suggested it.
Gordon has had his 3rd and last chemo. today. After tomorrow, five more radiation treatments to go. He'll be finished on Apr. 23. I can't believe we're nearly there. Pain is on the increase and so is the morphine. He now needs to take 10 mg. every 2 1/2 hrs. and is wearing the 75 mcg. Fentanyl patch. Amazingly, he hasn't lost any weight so far (of course, if you were eating 8 scoops of ice-cream per day, you wouldn't lose any either!). Then we have to wait to see if this is a cure...I'm hoping but can't help but wonder what will happen next if it isn't. Trying hard not to let my mind go there. Thanks so much for your concern and support.
Anne



Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Anne, so glad to read that the light at the end of the tunnel is in view. Remember that the first weeks after the end of RT will be just as bad as what went before. For me they were even worse. I don't say this to scare you but to prepare you. And of course take it with a grain of salt because we're all different. It sounds to me as though you both have the right attitude!

But then it'll be Over. Capital O.

As for wondering what's next... that's normal and we all do it. I went into treatment with the sure knowledge that this thing wouldn't kill me. I trusted my doctors and myself, and I was right.

Reading all your posts I feel exactly the same way about Gordon. Keep us posted.

Courage!

D the 2nd


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 10 years all clear in 6/19 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Elianne Offline OP
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I was hoping things would start to improve right after the last treatment, but that seems to be very unrealistic from everything I've heard, both here and at the clinic. Poor Gordon is so bombed on morphine (he saw two tuxedo cats walk by his bed in the hospital earlier today) and is starting to experience a bit of difficulty in swallowing. We may end up with that PEG yet. The dietition I spoke to today works somewhere else as well as at our clinic and said that at her other job, they put the PEG in as a matter of course, whether the person needs it at that point or not. Makes it a lot easier if swallowing suddenly becomes an issue. How did you keep going during the last weeks of treatment and first couple of weeks after without the PEG?
Gordon's not a terribly positive person, and isn't too upbeat about the outcome. I tend to get carried away by my fear and let it dominate me. It's hard to beat it back into submission, but I try. Anne


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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Anne, I am sorry to read of how your husband is struggling. Ask the docs about his pain meds, maybe upping the patch and decreasing the morphine. I had started with 25mg fentyanl and ended with 150mg. The 150mg patch was around for about 2 or 3 weeks, right at the end of my treatments. With the patch, i rarely had to use anything else besides the magic mouthwash.

Maybe a PEG tube would be a good idea. there is also a nasal tube which is more temporary.

The last 2 weeks can be really bad. It stays bad for about 2 weeks after treatment ends. Then it slowly gets better. About a month after treatments are finished he should really feel alot better, and keep improving bit by bit. A few steps forward and sometimes a few backward.

Hang in there, its almost over.


Christine
SCC 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 smile
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Elianne Offline OP
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Gordon was "upped" to the 75 mcg. fentanyl patch yesterday and still taking 10 mg. of morphine every 3 hrs. now. He was just discharged this afternoon from his 3rd and last chemo. He's been so out of it, some hallucinations (but he knows that's what they are, so he's not psychotic). The worst thing was late this afternoon and evening: it took forever to get 2 glasses of water and 1/2 of his "shake" down, with a lot of coughing, choking, drifting off into La La land and almost ending up with the straw up his nose or ear, even with me watching. When things get worse, they seem to do so suddenly, with very little advance warning.
I ended up calling the clinic and spoke to the on-call oncologist who said her medical advice was to bring him in. So we had to go back up and have him readmitted at about 10:00 tonight. I feel like I've let him down and can't help but wonder if it's just me that can't cope. ChristineB, when I see what you've been through, I feel like a whiner. Thanks so much for your support.


Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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The trick is to get the most calories down for each swallow. I lived on Ensure Plus which is about 360 but the carnation VHC which David found is 500+. If you are making shakes, it can be a lot more. I think there are couple of recipes on the board that are well over a 1000 calories per shake. I had no peg tube when I had radiation but did have a nasal tube after the laryngectomy for 8 days. If it is just for a couple of weeks, you might try that. Not pretty but it works and who is going dancing anyway.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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