Previous Thread
Next Thread
Print Thread
Page 3 of 3 1 2 3
Joined: May 2007
Posts: 27
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: May 2007
Posts: 27
Hello everyone,

I am new to the list. My husband was diagnosed with undifferentiated SCC on April 3rd. He had a sore throat that began in January and had been to see our primary care physician 3 different times regarding it. He was put on antibiotics everytime. Then he went to the dentist thinking it was related to his teeth. Finally, I made an appointment with an ENT (took 3 weeks to get in). He immediately found the growth at the base of his tongue, the space in between and just touching the right tonsil, 2cm.. A biopsy and rt. tonsillectomy was done the same week. The Dr. did not remove the growth. During the healing time, Wayne lost about 5 lbs. from the pain of the tonsillectomy. After it healed, we went to the RO and he explained the treatment process, then to the MO for his treatment plan. A PET scan was done and showed trace amount cancer in one right node. No further cancer anywhere...next the PEG, then the portacath and a few teeth removed.
His radiation and chemo began on April 30th. He has had 10 IMRT's at 200 so far, will have a total of 37. He also had his firt chemo (cisplatin over 4 hrs. and 5FU over 5 days(, will have one more chemo in 4 weeks. He was mildly nauseaus from the chemo and was given Kytril which worked wonderfully. His main problem has been the metallic taste and his saliva glands are drying up. He has maintained his weight so far and is still eating well.

One thing in his favor (or maybe not smile ) is that I was a certified oncology RN. The RO calls me his coach but, sometimes Wayne I'm sure could find a better term. LOL

The one negative is that everyday, he goes to the MO for the Ethyol SQ injection and then to the RO for the radiation. It is a $50 deductible for each office. Why in the world it can't be done in the same office is beyond me. I asked and was told that the RO nurses refused to "mess" with it. Oh, well, guess we can't change their system.

I want to say that I am very happy to have found this list. It is a Godsend!


**************************************************
Caregiver of husband w/undifferentiaed SCC, TX IMRT X37 @ 200, Chemo Cisplatin, 5FU X2.


Caregiver of husband, age 57, non-smoker, DX: 4/07 w/undifferentiaed SCC, TX IMRT X37 @ 200, Chemo Cisplatin, 5FU X2. TREATMENTS COMPLETED ON 6/20/07!!
Joined: May 2007
Posts: 27
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: May 2007
Posts: 27
One more thing that I wanted to add is that this was such a shock to us as Wayne has never smoked a cigarette in his life. Now everyone asks him how long he's smoked and when he quit. Very frustating to keep saying "NEVER!".

Pam


Caregiver of husband, age 57, non-smoker, DX: 4/07 w/undifferentiaed SCC, TX IMRT X37 @ 200, Chemo Cisplatin, 5FU X2. TREATMENTS COMPLETED ON 6/20/07!!
Joined: Apr 2005
Posts: 2,676
JAM Offline
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,676
Arvind, Your list above is very important, please consider adding for your Mom the following: good skin care between each radiation tx., mouth stretching exercises throughout, swallowing throughout, [even if she has a peg tube which I recommend she have for insurance that she can meet her daily nutritional goals], adequate pain meds on hand, good DAILY record keeping of nutrition, hydration, medication, bowel movements, blood pressure and any symptoms that "pop up" along the way. The word that comes to mind here is PROACTIVE! Think "Battle Plan". Wishing your family athe best going forward. Amy in the Ozarks


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

:
Joined: May 2007
Posts: 16
Member
OP Offline
Member

Joined: May 2007
Posts: 16
Thanks everyone -I've jotted down your suggestions. Need to consolidate and discuss with the specialist.

Just wanted to share an Update -
My mother went for getting her RT planned today (although we were also expecting the first shot to happen).. they have done some inking on her face to pinpoint the area needing treatment. Also asked to increase her liquid, semi-liquid intake. Did not really talk about PEG tube or other side affects today.. perhaps, they will take a wait & watch approach as the treatment proceeds and how her body reacts to it!

Besides, she sounded really upset as ink markings will prevent her movement outside home now. frown At least, I've seen quite a lot of change in her disposition since the diagnosis. It really hurts to see her lost in some unworthy thoughts (which even keep on bugging rest of the family as well). I don't think that it is something unusual but I'm sure that it can act counter-productive in further treatment.

Waiting very apprehensively of her reaction after the 1st RT shot on Monday..


CG to Mother (Bala Saigal/55/SCC, G1, T1N0M0, RT x 33 completed - 27/06/2007 | Presently recovering from the severe after-effects)
Joined: Apr 2004
Posts: 837
"Above & Beyond" Member (300+ posts)
Offline
"Above & Beyond" Member (300+ posts)

Joined: Apr 2004
Posts: 837
Arvind,

I'm kind of puzzled about the ink markings keeping her from going outside -- how noticeable can they be? I had small markings put on my face and neck before radiation started (this was years ago, long before masks were in use), and they're still there after 18 years, but I don't think anyone has ever really noticed them.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
Joined: Apr 2007
Posts: 93
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Apr 2007
Posts: 93
Arvind,

I haven't kept up with the responses on this site because my sister has been back in the hospital again this week. Anyways, I can briefly tell you what choices she made and the outcomes. Her cancer was found early on the left side of her tongue. It's a site that her dentist and she (my sister is a dental hygienist) had been watching closely for changes. She had less than 25% of her tongue removed in two surgeries, first surgery biopsy showed squamous cells, so surgeon went in again to make sure he got it all. He wanted to take some salivary glands and lymph nodes too, but my sister thought he was being too aggressive. About 6 months later she discovered a swelling in her neck and then had a partial neck dissection, instead of the radical that was recommended, and declined the recommended radiation. Margins were clean and she felt she had this beat. She is a non smoker and light drinker, was extremely healthy and physically fit. Into homeopathic health, acupuncture and open to Eastern health approaches. We think the radiated iodine she had to ingest 10 years ago for Graves disease may have lead to this, not really sure. Anyways the cancer returned to more salivary glands and lymph nodes and she had a radical neck dissection and declined the radiation once again....borders were clean, and lymph node was enclosed, even though the surgeon took out a mass the size of his fist from her neck. She recovered quite well, had some loss of movement in her shoulder, but was able to climb Yosemite Falls. Then about 3 months later she started having extreme pain and seizures and a large tumor was found wrapped around the carotid artery in her neck. Surgery was not an option, 7 weeks of IMRT and chemo (cisplatin) are what she underwent. All along she had not wanted to do the radiation and chemo because of all the serious after effects (dry mouth, some loss of taste, ect...., but had no choice at this point.
I would recommend your mother get a PEG tube, nutrition is very important when one is undergoing this treatment.

Your mom will be fine, they found it early and she is doing what the doctors are recommending. The mask is extremely tight and uncomfortable, it was for my sister. She had to take morphine and ativan before each treatment in order to tolerate it, but she also had all the scar tissue from the 2 surgeries to the neck area and the tumor on her carotid artery, your mother will not have those issues to deal with. Try to keep her spirits up and give her your love and support as you are doing now. Be strong, she will be fine.

Nancy


Caregiver to sister Connie, dx 2005, scc tongue, 4 surgeries inc. radical left side neck dissection 7/06, 35 IMRT, and 7 cisplatin 2/07, passed away 8-11-07, 51 yrs. young, fought with courage, strength and grace, found peace on her new journey.
Page 3 of 3 1 2 3

Link Copied to Clipboard
Top Posters
ChristineB 10,506
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,751
Newest Members
Legalfemme, MaryS, MuddyBob, Beth S, David Gotip
12,731 Registered Users
Forum Statistics
Forums23
Topics17,961
Posts195,920
Members12,732
Most Online458
Jan 16th, 2020
OCF Awards

Powered by UBB.threads™ PHP Forum Software 7.7.5