Previous Thread
Next Thread
Print Thread
Joined: Apr 2004
Posts: 26
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Apr 2004
Posts: 26
Hi Everyone,
Just back from the oncologist. I am the caretaker for my 86 year old Mother who, after surgery for tongue cancer one year ago, was found to have pre-cancerous lesions on the same area of the tongue. The doctor stated that it would require surgery to remove them, but is comfortable with her decision to do nothing and just watch them evey 3 months. There are other health issues such as non-pressure hydrocephalus which gives her more problems (right now) than the pre-cancerous lesions. The Oncologist told me he couldn't predict if they would turn to cancer, it could be never, 3, 2, 1 year or 6 months. He pointed out what would happen if we did nothing and also gave us facts on what could happen if we decide on the tongue surgery. Given other health issues we are of the opinion to leave well enough alone, and I could feel in my gut that the doctor was feeling the same but couldn't suggest this, just confirmed that he was comfortable with our decision to do nothing. The NPH is causing her problems with dementia, balance, incontinence and we are scheduling an appointment with a neurologist for an evaluation. The only solution for this is surgery where shunts are inserted into her skull to drain the excess fluid to another part of her body, and I don't even know if the neurologist would consider her a candidate for this surgery, and if he decides she is, we are undecided as to what we will do given her age and general health. She keeps telling me she is living too long and is tired. Please pray for us that we make the right decision.

Thanks,
Margie

--------
Caregiver to Mother Stg. 1 SCC, Partial glossectomy, resec, floor mouth, L neck dissection, all nodes clear, new pre-cancerous lesions same area.

Joined: May 2003
Posts: 928
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2003
Posts: 928
Marjorie
You are a good and loving daughter and your mum is lucky to have you in her life .
At this point the decision is probably not yours to make , let her go in peace.
Our prayers are with you .
Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
Joined: Mar 2003
Posts: 1,384
Likes: 1
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Mar 2003
Posts: 1,384
Likes: 1
Margie, If I were her/you I would consider another opinion or two from different professionals. Just for peace of mind and incase their are other treatment options. I don't recall if she is being seen at a major cancer center or not.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
Joined: Feb 2005
Posts: 118
Likes: 1
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Feb 2005
Posts: 118
Likes: 1
Your mother may feel that it is her time to go. Hospice may be of assistance to her and to you. You can contact a local hospice at any time to learn about their services.


Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
Joined: Jun 2005
Posts: 349
Likes: 2
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Jun 2005
Posts: 349
Likes: 2
Zenda, how did you tolerate the Erbitux?


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
Joined: Feb 2005
Posts: 118
Likes: 1
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Feb 2005
Posts: 118
Likes: 1
Hi Michael! You may have noted, if you viewed my previous posts, that I participated in a Phase II trial with Erbitux: Surgery followed by chemoradiotherapy plus C225 (Cetuximab). The chemo agent was either cisplatin or docetaxel, and I had docetaxel. Several "very likely" risks associated with Erbitux are also "very likely" with docetaxel including weakness, nausea and/or vomiting, diarrhea: I experienced none of these side effects. Following the loading dose of Erbitux, before chemo and radiation began, I had a minor headache which was relieved by Tylenol. I did have low-grade fever (99-100 degrees) at different times during the six week study and for several weeks after the study. I spiked temperatures of 101 degrees twice during the study and was given antibiotics with no break in treatment. Fever is "very likely" with Erbitux and docetaxel. I was also having concurrent non-IMRT radiation treatments during the six week period. The reactions that I experienced due to Erbitux were dry skin ("very likely") with cracks on the bottoms of my feet (easily treated with Aquaphor) and on my hands (treated with SPF 30 sunscreen multiple times each day). The "very likely" side effect due to Erbitux that I found most disheartening was "localized acne-like skin reactions." I had what appeared to be a bad case of acne on my face and across my back between my shoulders. Nasty to look at but the doctors were very pleased as this was an indication that the Erbitux was working. It "bloomed" about a week after I started Erbitux and new pustules were forming and breaking for five weeks during treatment. I used Cetaphil for cleansing and pure Aloe Vera gel for soothing. My skin is normally rather dry and sensitive. My skin reaction was a Stage 2 with the most severe being a Stage 4. April 18 was my final date with Erbitux and docetaxel. My dry skin healed in about three weeks, and my "pimples" had already started to heal. No permanent scarring is expected and most of the pimple sites have cleared.

On June 15 I had a CT scan as called for in my clinical trial protocol to be given three months after radiation began and the scan was clear. I will have another in August.

Cancer is a very tough teacher. I had done what I could through reading, meditation, joining a support group, being in good physical, mental, and spiritual shape to prepare myself for the potential brutality of treatments. This forum, as you are finding, is a wonderful resource not only for information about medications, treatments, etc. but also to know that others have gone before you and have not only survived but have thrived. Because of the resources that I turned to I believe I tolerated all treatments well. None were easy, nor did I expect them to be, but none were as difficult as they might have been had I not approached them with a "can do, will do" attitude. I hope that you will be able to do the same.

You're in my prayers. Please don't hesitate to stay in touch.


Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5