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#56667 07-05-2005 12:58 PM
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netteq Offline OP
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I have been absent for a little while. We have been trying to put our lives back together. It has been a difficult road. some days fighting, arguing, reconciling, etc. etc.

I have a question and am in need of advice.

Tomorrow we will go to the gastro doc to have the feeding tube removed. Harry is scared to death about this prospect but I move forward anyway because it has now become a crutch.

but my question is this....

on the same side that the nodes had been swollen, he is complaining about a terrible pain in the neck that is bothering him. He has had no surgery. When I look at him I see a small area that looks like it is swollen as compared to the other side of his neck.

Should I be concerned about this or is it just an after affect of the radiation and chemo? How long should we wait until we seek the docs opinion. I am afraid that we are going to walk this path of over reacting every time he feels something at all.

Additional note, when we went to the docs for the results of the scans, the dos said that they looked good and there was an area that showed on the tonsil area (my husband doesn't have his tonsils and hasn't for over 40 years) that he claimed was a residual of the radiation.

Thanks for your input!

Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
#56668 07-05-2005 01:24 PM
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Cindy, Glad to see you back. I have been wondering about you and Harry. His temperament
sounds so much like John's. Can't post to the above, but just wanted you to know I've been thinking about you. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#56669 07-05-2005 04:51 PM
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Some people here have been on feeding tubes a year. The pain could be caused from thrush. I had ulcerations that took months to heal. More than likely it is a side effect of the radiation/chemo. If it were me, I would see an ENT or Head & Neck surgeon and get a clearence from them before I got the feeding tube removed.

Emotionally speaking, this is probably the worst time - be patient, hang in there.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#56670 07-13-2005 11:49 AM
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netteq Offline OP
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Just an update. The ENT has scheduled a laryngoscopy for Monday. It appears that the Onc. is concerned about the pain in the neck (once again, this time it is not me for a change).

Harry is now convinced that the cancer is not gone. This whole thing has led to even greater stress.

Does a recurrence hurt? Will it manifest itself that way? Can a recurrence happen this soon after treatment? He will be one month cancer free tomorrow.

I have also discovered that he stopped taking his antidepressant without telling anyone and he has fallen into the information pit we call the Web. He is now reading all of the medical and statistical data on SCC base of tongue and pretty much scaring the shit out of himself.

I told him what many of you told me.... don't get caught in the statistics. Do you think he is listening to me? Not hardly!

We go for a precheck tomorrow with the ENT and to get registered. They have to put him under for the procedure which he is also not thrilled with.

I realize that all of this is a pain in the neck (pun intended) but I just wish that he could find a better way to cope. It makes it very difficult on both of us.

Thanks for your help!

Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
#56671 07-13-2005 02:18 PM
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Hi Cindy,
Well if he has finally 'fallen into to WEB', maybe you can get him to log on to this site and get some support and info. Pain is not good, but it is good to have it checked out. I think if he finds out he is not the only one with this cancer by logging on here, he may become a more responsive patient. Going thru this treatment is not fun, going thru it alone is terrifying. Push him to visit this site and maybe finding others with the same problems will help him.

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
#56672 07-13-2005 11:18 PM
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Hi Cindy; I am one of those odd persons who had a recurrence within a month. The neck was sore sore sore and I whined and complained about it while the docs scoped and poked for four months. Finally they did an MRI which revealed a mass...just where I said the problem was. The surgeon cleared his decks and operated immediately doing an extended radical neck dissection. I was sure this was the end of the road for me..yet it's funny how it goes. Here I am 5 months later with my latest MRI as clean as a whistle.
I am aware of my poor prognosis, the docs have reminded me enough, but my good friends and the people on this board also remind me that optimism is a right and is not to be surrendered without a real fight. I also dropped the anti-depressants, only to find myself slogging about in a bog of fear and foreboding. Needless to say, I started them up again pretty quickly.
Although I didn't like spending time in hospital, the surgery was a "short sharp shock", and with the help of a good physiotherapist the recovery is not too bad. Radiation, as you have probably heard from many is the gift that keeps on giving, even after surgery. The stiff radiated tissues are harder to stretch, but if you've come through the rads, this will not be an overwhelming experience by any means.
Please feel free to email me if I can help. I am grabbing a few days by the lake next week but will check my 'puter regularly.
Hang in there...the worst is past.
All the best, Fran B.


SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05.
Committed to survival with dignity.
#56673 07-25-2005 11:34 PM
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was just wandering what u guys found out?


Was Primary caregiver to my mom who had stage IV, SCC, Supraglottic with Mets to 4 nodes. Diagnosed Feb 04, died unexpectedly from complications from treatment December 17, 2004.
#56674 07-26-2005 02:32 AM
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netteq Offline OP
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Doc said everything looks great. But he has developed sleep apnea so he has to go and have a sleep study done so they can fit him to mask that he will wear at night to sleep.

Doc said that the radiation made his pharynx very rigid and that is why he has trouble breathing at night.

It is so bad that I sleep on the couch because I cannot sleep with him. He stops breathing numerous times a night and then makes terrible noise when he gasps for air as well as shaking and stuff.

Funny thing is, he has no idea that it is happening. He just sleeps righ on through it all.

But as far as the cancer, doc says everything is great! Here's to keeping it that way!

Thanks for asking!

Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
#56675 07-26-2005 12:14 PM
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That's great news, Cindy.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"

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