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#19037 12-10-2005 01:04 PM
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There's no question that you ultimately have to "be your own quarterback" ( I must say that ofent I find metaphors used here noticably more appropriate for men than for women--such as "band of brothers" and here's another--just had to point it out this time!)

I think it's also important, though, in that process, to try to find docs that are also interested in putting together all the important pieces, not just the one they are immediately treating. The nasty thing about depression, of course, is that it makes you less inclined to try to be proactive about getting what you need, because everything feels hopeless. So it's important there's a doctor checking for that.


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"
#19038 12-11-2005 03:12 AM
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I agree with Nelie that it can be difficult to struggle to maintain the big picture of what is going on in treatment, especially when you take into account the fear, anxiety,nausea and severe lack of energy that comes into play.

As John's primary caregiver I take on that role but with my own on-going heavy concern and a full time job it's also hard for me and I'm not the one who's ill.

The first week of treatment John had trouble with his PEG and had a fever so we had to go to emergency in the middle of the night. The cancer hospital he goes to is a university teaching and research hospital but they don't have an emergency so we had to go to a sister hospital. The first question from the triage nurse was: who's your doctor at PMH ( the cancer hospital)? I paused because at that point there were 3 doctors involved - the ENT/oncology surgeon, the medical oncologist and the radiation oncologist.

I gave the name of the radiation oncologist basically because he is the one we like the most. He's quite young and very warm, is open and encourages all questions. He does seem to have the best overview but when it came to asking his advice on possible participation in a follow-up trial he had to say he just didn't know because it wasn't his area.

I think it's easier to pull together an overview and introduce possibly new info that you've read about etc once you're well into the process. At the beginning, at least, we found it next to impossible.

Mary


Caregiver for John SCC left tonsil Stage III/IV dx Sept 05, tx started Oct 21/05 -IMRT 35, cisplatin 3 X 100mg/m2;completed Dec08/05.
#19039 12-11-2005 08:03 AM
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I hate those "who's your doctor" questions. I have the wonderful benefit at my workplace at having access to banked sick leave days after my own sick leave ran out. Everyone donates two sick leave days a year to the teachers union if they have them at the end of the year and then people with really long term medical conditions can still get paid by being awarded some of the sick leave. As a result of this, and working part time, I haven't had to apply for disability even though it's been 11 months since I was able to work full time.

But anyway. Each semester in order to apply for banked sick leave hours I have been asked to get a form filled out by "my doctor". Which doctor? (for me it's even more complicated because I have my ENT for the oral cancer and a breast surgeon for the breast cancer). Last Spring I had all four doctors fill out a copy of the form (rad oncologist, ENT, MO, breast surgeon) and this fall I just asked my ENT since the real issue with why I couldn't teach full time at the beginning was serious mouth pain which caused problmes talking(lately it has been exhaustion from breast raidation but apparently what he said was enough for the whole semester).

Basically, right now my ENT and the MO are the ones who are staying really involved so theya re who I'd list if someone asked for some other reason.


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"
#19040 12-11-2005 03:53 PM
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Ok I give up what's an MO? "Mother of all oncologists"?


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)
#19041 12-11-2005 04:03 PM
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Medical oncologist (mine also happens to be an internist, so the primary care thing works out well).

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#19042 12-13-2005 11:14 AM
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seremom Offline OP
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It seems like everyone is different and the "be your own quarterback" advice is the best. I have definitely been an agressive caregiver for Ken - staying on top of everything. We do not live in a large metro area and the Oncologists here in NW Arkansas are swamped. While Ken's medical oncologist is super, it is obvious his plate is more than full. We have a terrific relationship with our family doctor (a GP) and we felt very comfortable talking with her about the overall situation. It also helped to have someone to ask "what should I ask the other doctors"? I wish I had found this website much sooner after Ken's diagnosis.


Carol R - caregiver to hubby Ken. Stage 4, SCC, BOT. 6/05 dx, 9/25/05 last tx, 5/06 stroke. Four years cancer free! Still taking things 1 day at a time.
#19043 12-13-2005 01:18 PM
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Yeah, good oncologists are really swamped when you aren't in a major metropolitan area. That's true of my MO (and his partners in that practice) as well. Nonetheless, I was glad to hear that he wants to keep seeing me every two months for a while. What that means is every month I see either the ENT or someone at the MO's office (every other time it's the nurse-practitioner, not the MO, but she is just as good) so I'm being checked for syptoms that could indicate recurrence once a month (though he doesn't look in my mouth quite as thoroughly as the ENT). I hope that can continue until I reach the two year from diagnosis mark.


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"
#19044 12-15-2005 10:53 AM
Joined: Jul 2005
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Hi Seremom,

I'm 58 and I also had tounge SCC with two lymph nodes. The depression is natural, but very tough to deal with. I began to work out two weeks after my neck disection and used no drugs. Even though I was weak and it was frustrating, it helped my spirits trmendously. I could see the light then. I knew trhat if I could lift two pounds today, I could lift three tomorrow or the next day. Try to get him some exercise, even a short walk to begin. If people know what you have gone through and they see you trying to get well, they offer lots of encouragement. It helped my spirits.

Steve


SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
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