#14762 01-04-2004 08:58 AM | Joined: Jan 2004 Posts: 2 Member | OP Member Joined: Jan 2004 Posts: 2 | Hello, just came across this site and it's great... lots of good info and support... a little background to put my questions in context. I'm a 43 year old male in (otherwise) good health living in London. Last May/June I was diagnosed with SCC after discovering a lump in my neck while shaving. I came to New York for treatment at New York-Presb. and MSKCC (2nd) and the primary source of the cancer was discovered (Base of Tongue). In June I had a modified radical neck disection (LHS) with 59 nodes removed (3 positive). In July started radiation with 30 doses to the neck/tongue and 25 to the chest ending in early September. Concurrent with the radiation I had 2 courses of chemo with Cisplatin. After a couple months off to heal, I began adjuvant chemo with Taxotere in November and have just about completed 2 courses (4 to go).
On to the questions...
While adjuvant chemo hasn't been 'proven' to be beneficial for head and neck cancer, I understand this is because the trials, etc. haven't been done. Does anyone have any experience/thoughts on adjuvant chemo?... using Taxotere?
I have had a unususal reaction to Taxotere it is called 'radiation recall'... basically in a few days many of the side-effects of my earlier radiation treatment came back in full force (swollen, raw throat, etc). With the help of steroids I have been able to continue to eat by mouth (had my PEG removed in mid-Dec.), but had to deal with quite a bit of pain, etc. Anyone with experience with this...?
Probably my biggest source of discomfort is the Xerostomia (dry mouth) caused by the radiation's effect on the salivary glands... other than sipping water and Salivart, does anyone have the magical solution to this one...? will my salivary glands ever come back (DRs have said it might be permanent)...? I've tried Evoxac (made me very sick) and Salagen (didn't seem to do anything) but would be willing to try these again if I could find anything positive about either one...
Other than an impressive weight loss (180 to 135) - I'd make Mick Jagger look beefy! - and other minor/normal side effects I must say I've been through the worst and am feeling pretty good. As many of you know - the best treatment has been a positive attitude which I've been able to maintain thanks to a very supportive family, friends and employer!
thanks in advance for any info/advice...
Scott, SCC, Stage IV, base of tongue, dx 5/03, modified radical neck disection LHS 6/03, radiaton/chemo (Cisplatin) 7-9/03, adjuvant chemo (Taxotere) 11/03 - 5/04.
| | |
#14763 01-04-2004 03:26 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hello Peter, and welcome. For the dry mouth I found that whole milk worked quite well for eating. A product called Biotene mouthwash works as a thicker and longer lasting effect in the mouth between meals. I can't say if it is available in the UK but they have a web site www.laclede.com They have a whole product line for dry mouth. As to getting any salivia back, it seems everbody is different. Some get none some get some. It takes time though, I got just enough back that I can talk and get through the day without the water bottle constantly by my side. As to your other questions I can't help you. I didn't get chemo. There may be others that will. Good that you have made it through the tough part!
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.
| | |
#14764 01-06-2004 03:43 PM | Joined: Jul 2003 Posts: 235 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2003 Posts: 235 | Hello. Welcome to the forum. Although I haven't gone through treatment personally, I'm the caretaker for my mom who finished the bulk of her treatment late last year. She is part of a study that included induction chemo (Carboplatin and Taxol (Taxotere)) followed by concurrent chemo-radiotherapy which consisted of a 24 hour infusion of Taxol for five consecutive days with one week off over a period of ten weeks. The side effects you mention seem consistent with what my mom went through, however she still has her PEG -- so you're a step ahead of the game. The dry mouth and dry throat is still a problem and she too didn't have much relief from Salagen. I'm looking for options as well. I've been told that her salivary glands will most likely not return to the way they were prior to this whole ordeal (the radiation kicks the hell out of those glands), so I encourage her to drink as much water as possible to help keep things moist. The issue there is that the inside of her mouth still burns (chemo-radiotherapy ended around the third week of September, a biopsy of the primary (inside of cheek) was taken in November -- and is still healing, and she had to have her esophagus stretched at the same time, hence the ongoing pain. Your weight loss seems consistent with the other patients that I met who went through the same study as my mom. It's a rough road, but her neck dissection, biopsy and scans have all come back negative -- as have those of the other patients I've met -- so hang in there.
Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice. Died 10/13/15. What a long and difficult journey.
| | |
Forums23 Topics18,252 Posts197,147 Members13,332 | Most Online1,788 Jan 23rd, 2025 | | | |