#55940 12-16-2004 01:00 PM | Joined: Jul 2003 Posts: 235 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Jul 2003 Posts: 235 | Hi everyone,
I took my mom to the doc and its confirmed that the pain in her feet, legs and fingertips is a side effect of chemo, something called Neurpoathy. Evidently all of the other meds she was taking masked the discomfort, hence the delayed diagnosis. But now that she's been taken off of some meds (depession, morphine, etc), the neuropathy made its presence clear. The situation is that the drug used to treat neuropathy dries the hell out of her already dry, radiated mouth. Salagen doesn't seem to help. Accupuncture helped prior to the medication prescribed for the Neuropathy, but not anymore. Has anyone found a med that seemed to work better than Salagen? I'd really appreciate any ideas. It seems that were getting back into a situation where each doc has another drug they want to give her. I know their intentions are good, but some of these drugs (namely for neuropathy) have had a unpleasant physical and psychological side effects.
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.
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#55941 12-17-2004 05:24 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Sorry I don't have an answer to your question as Salagen worked for me but I wanted to get you back to the top so someone else can answer. Your mom is on my prayer list though. Your family has certainly had your trials the last couple of years. My heart and prayers go out to you. Love, Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#55942 12-17-2004 07:16 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Salagen comes in different strengths and one can take as many as 6 pills a day. Have they tried upping the strength or # of pills taken a day? Problem is at higher dosages, I had severe sweats for breif periods. I, however, was not suffering from Neurpoathy, just dry mouth.
Hope your Mom feels better.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#55943 12-17-2004 04:28 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Didier,
Eileen is right. When I was in clinical trials for Salagen almost 14 years ago, there were several doses that they tried with us. At one point I was at 7.5 mg 3x daily and was sweating quite a bit. I've ended up at a steady dose of 5mg 3x daily ever since and that works for me for the most part, but they may be able to increase your mother's dose if she's not at the maximum.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#55944 12-18-2004 02:14 PM | Joined: Jul 2003 Posts: 235 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2003 Posts: 235 | Thanks everyone. I'll check into increasing the strength and frequency and with a little bit o luck we'll get some better results. Best regards,
D
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.
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#55945 12-19-2004 04:30 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello D,
I don't have dry mouth due to receiving IMRT. Seems to have saved the salivary glands. I know some people thru the chemo treatments that are suffering neurpoathy. They come in for shots as part of the treatment. My question for you is how long does this numbing of the feet and hands last? I have had some slight numbing of my fingers but it never lasts more than 10-15 minutes. I am receiving Carboplatin & Taxol. She told me last Monday I'm tolerating the chemo really well.
My Best to both you and your Mom this holiday season my friend!! I hope you can draw many of the good memories of your Father to help you also. I no he would want you to.
Love Ya, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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