#43968 10-13-2004 12:28 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | OP Platinum Member (200+ posts) Joined: Aug 2004 Posts: 217 | Hi, Everyone... Tom had his last round of chemo on Friday and the weekend went pretty darn well. The last three days, however, have been just horrible; he can't keep anything down - not even water - and I think he vomits all the pain meds he takes. He's gotten sick immediately after getting off the radiation table and has lost 10 lbs in the past week. The radiation doc is having me bring him in early tomorrow for some intravenous nourishment and meds...... Needless to say I'm worried and feeling less than helpless. I was not happy, either, that when they did his weekly blood draw, the did not include a clotting sample....although I told them the one doctor ordered it, they said they only had orders for the CBC...sigh...I know that means they'll poke him again tomorrow...
The ride has wiped me out (drizzly rain makes me sleepy, anyway.....and 90 minutes of it is ucky..) so I'm going to open a can of soup and crash.
Just thought I'd vent. Love you all 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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#43969 10-13-2004 01:07 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: Dec 2003 Posts: 528 | Hi Nicki
Sorry you and Tom are having such a tough time at present. Such a long drive to treatment also. You are in my thoughts and I wish you both a better day tomorrow.
Love and light from Helen
RHTonsil SCC Stage IV tx completed May 03
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#43970 10-13-2004 01:19 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Hang in There Nicki I know how tough this is on you and Tom , what he is going through is about par for the course. They will be able to give him some meds before his treatment, just make sure he stays hydrated. You are doing well girl, wont be long till this worst part is over. Love Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#43971 10-13-2004 01:21 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Feb 2004 Posts: 372 | Hey Nicki, Prayers are with you. Dan really felt worse for the two weeks after treatment than he did during the last week. Seems like it all just catches up with the body. The oncologist had told Dan he would feel real bad for a few weeks before even beginning to feel any better at all...that turned out to be too true. Hang in there and know that it does get better...it's what keeps one going...him and you! Take care, God bless, 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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#43972 10-13-2004 01:26 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Hang in there Nicki!!
No one ever said this trip is easy. Please remember things will start to get better. It's a slow process. One day you will be looking back on these diffucult times. They will be just a memory. Radiation & chemo the gift that keeps on giving. It lessens in a couple of weeks and Tom WILL start to notice improvement. We all went through similer treatments and we all react diferently to similer treatment. You are doing a great job as Tom's caregiver. Vent here all you want. You are not alone in this battle.
God Bless, 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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#43973 10-13-2004 01:46 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | OP Platinum Member (200+ posts) Joined: Aug 2004 Posts: 217 | Love to all of you. He's sound asleep, and I'm feeling lonely.......You remind me daily that we WILL get through all this and be happy on the other side. The soup tasted flat and now I have a tummy-ache! Probably should have passed on dinner, anyway. The house is so incredibly quiet - Tom isn't even snoring! The dogs are all asleep, too, so even my 'talking' one isn't here to carry on a conversation. (I REALLY DO have a talking dog!...and if you ask her to "start the Harley," she'll grumble, grumble, grumble and then, finally, come out with a great sounding growl!...puts visitors into fits of hysteria!) Heavy sigh... I'll go watch the political game alone, I guess. Have a good evening all - May God watch over you as you sleep, work and play. 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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#43974 10-13-2004 04:44 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Nicki, Give Tom a hug for me. Reading your posts took me back to radiation. I did not get as sick as Tom is right now but I do remember how it felt to be at his point in treatment. Also, a hug for you. Love, 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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#43975 10-13-2004 05:14 PM | Joined: Jul 2003 Posts: 235 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2003 Posts: 235 | Nicki, Hang in there. I know it's easier said than done, but ya gotta do it. Say hi to Tom, wish him my best and please take care yourself! 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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#43976 10-13-2004 08:29 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Hi Nicki, I was sick a lot in the end of treatment. Lost over 60 lbs and got very weak also. It's actually fairly common but hard to watch. Like others have said this is the home stretch and it might continue to get worse for several weekd post Tx. The thing to remember is that this is to be expected - it is not a sign of worse things going on. My second chemo Tx was far worse than the first. They decided to skip the last one altogether (I was originally scheduled for 3 Cisplatin treatments). I also had to be rehydrated a couple of times, which always makes you feel better. It is vital to stay on top of the 2-3 liter of water a day rule because the kidneys can be damaged from the chemo if the toxicity levels get too high.
The doctors have to do a better job managing the nausea. Has Tom tried compazine suppositories? They worked well for me when I couldn't keep anything down. One of the most powerful anti nausea drugs, Zofran, only works for a few days at a time so you have to keep shifting around to different drugs to control it. It surprised me how many people in oncology didn't know that.
I have put half the weight back on and I'm feeling pretty good these days - just had a clean 22 month post Dx exam and after the next one in December, I will be moving to 3 month intervals. Hang in - believe it or not, Tom is on the brink of turning around. Progress will be slow - measured in 3 week intervals.
Congratulations! - you got post #1000.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#43977 10-14-2004 12:37 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | OP Platinum Member (200+ posts) Joined: Aug 2004 Posts: 217 | Hooray, Gary! Post #1000! I feel special now! (And I remember that I was Member #1500, too!) I've got myself in a better frame of mind now, gang. It really is a help to know that many of you went through all this and are doing well now. They have scheduled him for daily infusions of fluid and liquid meds...and we are changing up the nausea drugs. I do know that the Zofran was labeled to be taken only the first few days post Cisplatin....and we had Dexamethasone and Compazine to work into the regimen. I'll have to review what they gave him today in the IV. The radiation doc really did warn us that this 4th infusion of Cisplatin was going to be a butt-kicker....he definately knows what he's talking about! I think I'll bake cookies again tonight...housework is just too boring I don't know who breaks into the house each day to make it such a mess, but I sure wish they'd STOP! Nite-nite...
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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