#34463 02-12-2006 11:42 AM | Joined: Feb 2006 Posts: 9 Member | OP Member Joined: Feb 2006 Posts: 9 | Hello and Thank you to all, My Mom was dx in November. She had a malignant tumor, stage 2, removed from her mouth 3 weeks later. Squamous cell. 11 lymph nodes came back clear. We were told no further treatment. In January we went back for a checkup and 2 biopsies were taken (sores in her mouth on both sides). Both came back cancerous. We are having a feeding tube put in this week and she is giong to begin 7 weeks of radiation and 7 chemo treatments. It was suggested to have the Ethyol drug but now I have doubts due to the horror stories that I have read. My Mom is 76, 5'2 and 120lbs. She is a 9 year breast cancer survivor (lumpectomy, 30 rad. treatments). I want to help her make the right decisions. She is very afraid, so am I. She really dosen't want chemo. | | |
#34464 02-12-2006 01:06 PM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2004 Posts: 417 | Treatments have side effects. It is not a walk in the park. But the alternative to not having treatment is bleak. Hang in there. Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#34465 02-12-2006 01:43 PM | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | The best results are coming from radiation plus chemo. I would suggest that you explore if they have Erbitux available where she is going to be treated as it is showing excellent results in stage three trials. Since she has danced with cancer and chemo once already, I can understand her concerns. But this cancer is not very forgiving of half measures.... were I in here shoes I would bite the bullet and fight on through with combination therapy. Needless to say, this is something that the doctors who did the original surgery should have done at that time, since in this short a period, this is not a recurrence but residual disease that was in the surrounding tissues. This makes me think she was not treated at a major cancer center, and her primary doctor is a surgeon. A team of doctors that included a radiation oncologist would have likely treatment planned this differently at the time. Of course that is water under the bridge right now, but I wouldn't be happy about the emotional roller coaster ride that this is causing her and you.... again.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#34466 02-12-2006 02:26 PM | Joined: Feb 2006 Posts: 9 Member | OP Member Joined: Feb 2006 Posts: 9 | Thank you so very much. I will check on the Erbitux. Maybe we will skip the ethyol if that will make her sick/side effects. | | |
#34467 02-12-2006 03:01 PM | Joined: Jan 2006 Posts: 23 Member | Member Joined: Jan 2006 Posts: 23 | Ethyol injections (Sub Q) have less side effects. My husband started radiation with ethyol injections a few weeks ago and did not have any side effects until he started chemo.Ask your physician if this would be an option.
NANCY
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#34468 02-12-2006 04:14 PM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | Chemo does not have to be a terrible experience; when combined with radiation it is a booster ("radiosensitizer") to improve radiation effectiveness and not as a monotherapy -- so usually given at a relatively low dose. With the new anti-nausea drugs like Anzemet and Kytril, it can be reasonably well-tolerated. When my husband was diagnosed, we asked hard questions of our medical oncologist re side-effects of the several possible chemo drugs (as he wanted to avoid exacerbating a neurological problem he has) -- she precribed carboplatin in 7 (small) weekly doses as the least toxic and truthfully, my husband said the chemo was a "non-event" (his words) compared to the radiation and yes, the Ethyol. He took Ethyol all the way through but it was difficult, the need to hydrate became very hard as swallowing became more of an issue but he did it. Not everyone can, and you can't predict this based on age or anything else -- my husband is 66 and several young strong guys/gals couldn't handle it at all. It should be given sub-cutaneously (by injection), patient needs to drink 20-24 oz. water beforehand and -- very important -- take a good anti-nausea drug 90 minutes before the injections. My husband took Zofran and at the end, Anzemet. Brian's advice is good -- patients where my husband was treated (Hopkins) have shown very positive results with both Erbitux and another targeted drug, Tarceva. These were given in a trial setting but I believe Erbitux is near approval for HNC. Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#34469 02-13-2006 10:46 AM | Joined: Feb 2006 Posts: 9 Member | OP Member Joined: Feb 2006 Posts: 9 | Thank you for your help. Treatment should begin this week and now I know the right questions to ask. Armed with some knowledge, I feel a little better. | | |
#34470 02-16-2006 07:37 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | MK, I'm sure your mother doesn't want chemo...heck, none of us really did!  Do what it takes to feel comfortable in the battle. As far as Ethyol, there is no standard and some people have no side effects. Wishing only the best, Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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