#43994 10-16-2004 12:10 AM | Joined: Sep 2004 Posts: 28 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2004 Posts: 28 | We met with all the doctors at Cleveland Clinic yesterday. The game plan is for Ken to get his simulation, blood work, etc. next week, and then begin treatment on Oct. 25. He will be in the hospital for the first 5 days, chemo and radiation simultaneously, followed by 6 more weeks of radiation, with another week of chemo somewhere in there. His radiology oncologist doesn't feel IMRT is appropriate due to the size of the tumor and the lymph node involvement--says he thinks there would be too big a risk of reoccurrence. The Clinic is 90 minutes from us, a lot of driving, I know, but I am more than willing. The doctors say the last half of treatment, he might want to stay at Hope Lodge (a facility for cancer-treatment patients) as they don't think he will be able to do the 90 minute drives. For some reason, this is bothering him more than anything else. Anyone have any experience with this? (No teeth are being pulled--thanks for the good advice!) Wish us luck...
Sherry (Dolores is the name of my cat) Wife to Ken, starting chemo/radiation 10/25/04. Stage IV SCC of right tonsil, T2,N2A,MO
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#43995 10-16-2004 01:09 AM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Aug 2004 Posts: 217 | Hello, Sherry. My husband will have his last radiation treatment on the day your husband begins. The plan structures are different (Tom had 2 rounds of chemo, then began the daily radiation with 2 additional rounds of chemo included. He has had 4 weeks of IMRT as well as 2 weeks of field radiation for his Stage IV tonsillar cancer (T1N2b). We are down to the home stretch. As all our friends on this board let me know, the first few weeks were unpleasant, but bearable. Since his last chemo, however, things have been most difficult and the 90-minute drive to UVA is feeling like torture. He's constantly nauseous and we go nowhere without being prepared. I have discussed with him the idea of just staying in Charlottesville for this last week - he has to go in for 4 hour fluid infusions each day, as well - but he is resisting. He wants to be in his own bed. He sleeps most of the drive down, and always sleeps the entire drive home. I am, as you say, more than willing to make the trip, but it becomes mind-numbing day after day. I have had some relief with family and friends driving, but I really hate having them spend an entire day down there. I may see about staying down there most of next week.......
Sherry, I wish you both the very best of luck with this new fight. Please keep me posted on his progress. I'll be thinking of you every day and remembering you both in my prayers. Nicki
Nicki, wife of Thomas dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#43996 10-16-2004 02:21 AM | Joined: Sep 2004 Posts: 28 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2004 Posts: 28 | Thanks for your reply, Nicki. Sounds like we are in very similar boats, with mine several weeks behind yours. Ken's objection, too, is that he wants to come home at night to sleep in his own bed. Since his chemo will be done entirely in-hospital, with traveling occuring just during the radiation-only weeks, it may be manageable. We will just have to wait and see. I have family (out of state) who have offered to come stay to help out. Unfortunately, my father is ill right now, and I can't call on them, because they have to be there to help him and my mother. My son is a senior in high school, and fairly self-sufficient, and that helps, but I am starting to worry about the logistics of all this. I think I need to take it a day at a time. Thinking too far ahead will just drive me nuts!
Sherry (Dolores is the name of my cat) Wife to Ken, starting chemo/radiation 10/25/04. Stage IV SCC of right tonsil, T2,N2A,MO
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#43997 10-16-2004 03:10 AM | Joined: Feb 2004 Posts: 218 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2004 Posts: 218 | Hi Dolores, I travelled to Boston for my radiation treatments from western Vermont. It was a 3 1/2 hour drive so I decided to stay in Boston during the radiation treatments. In retrospect, I probably could have driven back and forth myself for the first 3 weeks but once the effects of the radiation started to build, I was very grateful to be living in Boston close to Mass General. I still went home for the weekends until the end of week 5 when I couldn't do much but stare at the ceiling.
I'd suggest making the arrangements to stay in Cleveland now, so you won't have to hassle with it later and then let Ken decide whether or not he's up to the travel. I assume you can always cancel reservations. Best wishes for a successful treatment. - Sheldon
Dx 1/29/04, SCC, T2N0M0 Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions) Dx 3/15/2016, SCC, pT1NX Tx 3/29/16 Surgery
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#43998 10-16-2004 03:19 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Feb 2004 Posts: 372 | Hey Sherry, Prayers are going up for you and Ken. This is such a hard thing to go thru. Like you, my mom was also ill during Dan's treatment and it was so hard seeing Dan so sick and knowing I couldn't be helpful to my mom at the time. Hope you have a great support system in place. We only made it thru with our faith in God to walk with us and also a group of bible study folks that we relied on heavily at times.
It's a long road, but there is light at the end of the tunnel. Take care, Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#43999 10-16-2004 03:21 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Sherry, I will add you and Ken to our churches prayer list tomorrow. Remember, knowledge is power. Learn everything you can about his treatment. Take care, Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#44000 10-17-2004 06:07 AM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2004 Posts: 261 | Hi Sherry! I wish you both well in the coming months. Keep yer chin up & don't look back. It is a day by day & minute by minute process. Go easy on Ken & take time for you once in a while. The first week of treatment I had an apartment in Seattle, but I wanted to be home so we gave it up & I drove back & forth to Seattle by myself. I got rides from family & friends the last week of radiation. Everybody thought I was nuts & maybe I am, but thats what makes me me! There are puke stains on the car deck of the Bainbridge to Seattle ferry run to this day I'm sure of it! HaHa! At least I can laugh about it now & someday you guys will to! Keep us posted.
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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#44001 10-17-2004 11:50 AM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2004 Posts: 417 | Sherry: Everyone is different and I am not a medical professional, but, I have been through both radiation and Chemotherapy simultaneously. We live 97 miles from the treatment facility we used in Memphis, Tn. and traveled up and back daily for 40 days. I had radiation daily and chemo on Fridays and never needed to stay overnight. Just take one day at a time and deal with adversity as necessary. Good Luck: 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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#44002 10-17-2004 03:53 PM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | Sherry, as Darrell said, we are all different in how we deal with this treatment. I drove myself to and from rad treatments which were over an hour away except for when I had the chemo every 21 days. They checked me into the hospital for that on a Thursday and I went home Saturday or Sunday. Then started rad again on Monday. I also didn't use any pain meds as I was still working, which required me to drive around. Didn't want to fall asleep at the wheel so didn't take meds until I got home at night.
I tried to stay at Hope Lodge toward the end of my treatment, but they were very strict about caregivers attending the orientation session. As my wife works, she couldn't attend and they wouldn't let her stay with me. So I left as I wanted to be with her, not staying overnight away from her. So if you go, make sure you both can attend the orientation so you can stay together. It would have been very nice to stay there if it wasn't for the strict rules. Good luck and will add you all to my prayer list.
Regards, Kirk Georgia Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#44003 10-18-2004 07:29 AM | 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 | Sherry, Sorry you and yours are traveling the so familiar road. It seems like yesterday Nicki was where you are with her Tom. Just like all of us, there will be some good days and some bad days but overall the experience will be more positive because it is the best option for beating the beast! All these people and you sound like such warriors. I remember the radiation oncologist asking me if I really wanted to travel "this far" for treatment. It was a 45 minute drive and he was so concerned that the travel would be too rough for me. I had many options here in Dallas but heard he was the absolute best for radiation and head and neck cancer so I went there. Through the treatment I thought the big shoe was about to drop because it didn't really seem that bad, overall. I had a strange reaction to Ethyol (used to protect the salivary glands) and a brutal reaction to dexamethasone. I keep hearing this silly story about me opening the car door at 60 mph to spit the horrible brown goo out. I sure thought it was no big deal but after hearing the story so many times a year later, maybe it was the drugs! You have found the right place for support, warmth, support, kindness, support, love, support... Glad to have you here and ask any questions and somebody will be able to answer them. Good luck on the journey. 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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