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Barbara5524 #197995 03-22-2019 09:36 PM
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Just wanted to say I am thinking of your husband and yourself and sending get well vibes!

What you said about the psychological aspect of this journey resonated with me. We focus so much on getting healed physically but this ordeal requires healing psychologically as well, but it is in the back mostly while the physical is in the forefront. It rears its head though for sure.


Again, hope all is going as well as can be expected.


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
VirgoMomof3Boys #197996 03-23-2019 07:25 PM
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Thank you. Things are going well. The doctors are not recommending radiation or chemo at this time. He has his next appointment with the Head and Neck surgeon in June. We are still waiting for the second follow up appointment with the plastic surgeon and to find out when they will schedule the outpatient surgery to remove the skin covering the posts for future dental implants. After we know that, we can start thinking about heading home for awhile. Thanks to this forum, I knew to ask about alcohol when we had the follow up visit with the surgeon. (I figured it was better to hear it from the doctor). The doctor was very definite about the need to greatly curtail alcohol, so much so that I was surprised that I had to be the one to bring it up. My husband doesn’t usually have more than one beer a week, but the doctor said that was too much. My husband never smoked so that is not an issue. The other risk factors (gender and age)-well, not much to do about those.

I am so grateful for all of the information and support I received from everyone here.


Husband DX’d 1/17/19 with SCC on lower left gum
Mandibulectomy 2/28/19
Recurrence 11/19
Barbara5524 #198007 03-25-2019 07:40 PM
Joined: Sep 2018
Posts: 71
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Oh gosh fingers crossed that no radiation and/or chemo!!!! So glad to hear that things are moving along without any sort of complications.

I don't know much about the no alcohol rule. I know that as a general rule it's just 'not recommended' but there may be more to it with the cancer being a HPV positive cancer? I'm not really sure, maybe someone else will chime in here that has a better guess.


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
VirgoMomof3Boys #198008 03-25-2019 07:49 PM
Joined: Feb 2015
Posts: 133
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Dana Farber told me zero alcohol. It appears that if HPV is involved that may be different.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15
SCC stage 1, lower gum Mar '23

TLC356
tlc356 #198018 03-27-2019 05:34 PM
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Posts: 22
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Posts: 22
My husband told the surgeon that he usually has one beer or glass of wine a week and the doctor said that was too much. I only knew to ask the question because of the information I got here. We saw the plastic surgeon today and he said my husband is healing well. He still has pain in his leg so he will be getting follow-up physical therapy once we get home. His facial swelling is still there but has gone down. The neck scar is pronounced but luckily pretty well disguised by neck folds and shirt collars. The site on his leg doesn’t look good to me, but the medical people say it is healing well, so that’s what counts. Down to one dressing change a day, and almost done with the boot!

Thanks again for all of the support I have gotten here.


Husband DX’d 1/17/19 with SCC on lower left gum
Mandibulectomy 2/28/19
Recurrence 11/19
Barbara5524 #198019 03-27-2019 07:05 PM
Joined: Jun 2007
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Many patients who undergo such a major surgery will get a visiting nurse to stop by a few times a week to check on them and change the dressings. Unfortunately this great service is available with certain medical insurance coverage. Im sorry but with 100s of plans out there varying by state/region I cant begin to figure out which insurance gets the coverage and which ones dont. Im sure it goes by certain diagnosis among other criteria. I was able to have a visiting nurse for 3 times a week 8 months post my mandibulectomy. My case is not the average case, I had major complications and was not healing so needed a picc line with IV antibiotics for 8 months, HBO, wound care specialists and many other special services to get back on my feet again. I just remember what bad shape I was in and how nice it was to have an nurse come check on me. If you continue to think your husbands leg doesnt look like its making progress, at the next doctors appointment ask about a visiting nurse to get your husband thru the next couple months of his recovery. You may also want to inquire at his check up about seeing a wound care specialist to help with his healing. They have so many options that regular doctors do not. I was pleasantly surprised at how helpful they were with all of my problem areas.

Best wishes with your husbands continued recovery progress.


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
ChristineB #198024 03-28-2019 06:33 PM
Joined: Jan 2019
Posts: 22
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Thanks, Christine. We are heading back home to Maryland early next week. We have had visiting nurses, PT, OT and a home health aide for a few visits a week but they are discharging him tomorrow from those services. He is no longer using the walker. I will definitely keep an eye on the leg wound (I have no choice as I am changing the dressings). It is good to know that there are wound specialists available if we need that. So far, the doctors think the graft on his leg looks good so let’s hope it continues to improve. He will be seeing the plastic surgeon again in May.


Husband DX’d 1/17/19 with SCC on lower left gum
Mandibulectomy 2/28/19
Recurrence 11/19
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