| Joined: May 2009 Posts: 72 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: May 2009 Posts: 72 | Chris, Lidocaine also worked for numbing but made him sick after chemo. It would be good to have the option of taking either the magic mouth wash or Lidocaine Both seemed to work for him. No need to soldier on through the pain...it just makes you weaker and slower to heal.
I'm glad to hear you have availability of rides. You will feel better knowing you don't have to function fully to have to drive your self. Plus you might not even realize your not functioning at full capacity.
I have periodically gone on this forum throughout Jeff's treatment. Margaret has been great as a support. Her husband had the same diagnosis excately 2 years ago almost to the date. Pretty much what people told me to expect, as far as a time line has been true. The side effects of treatment , with a few exceptions have been in line with what her husband experienced. It was most helpful for us to have heads up on what we might expect. I'm glad you are reaching out on this site.
Take care Vanessa
Vanessa
Jeff age 49 DX 5/8/09 Tonsil cancer T2N2BMO. Tonsillectomy 5/14/09. TX: Cisplatin 3x's every 21 days w/ 33 Rad concurrent. 2-3 nodes on right neck affected. PEG 7/10/09. Chemo/rad start 6/12/9, TX finished 7/28/09. Extended TX 3 more chemo/Cisplatin/5FU/Docetaxil start 9/11, Clean PET 10/29/09.
| | | | Joined: Feb 2009 Posts: 88 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2009 Posts: 88 | Chris,
I have been thinking of you today as you should be close to finishing your treatments and your OC diagnosis was similar to my daughters. We are 3 months out of treatment and feel we have turned the corner, but worried about you. I don't know why but I'm praying for you.
God bless, Bonnie
CG to daughter Brandy age 31 initial dx 10/06 SCC T4N0M0 with bone invasion upper maxillary Surgery 10/06 CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx Tumor board - No surgery to invasive for QOL 35 IMRT 3/30/09 Completed 5/15/09 8 tx Erbitux 3/24/09 Completed 5/6/09
| | | | Joined: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | "OCF across the pond" Gold Member (200+ posts) Joined: Jan 2009 Posts: 225 | Hi, just wondering how you were doing? I know Martin had sores and ulcers and thrush (which cleared with medication). He ended up with a feeding tube for the last 2 weeks of treatment and kept it for a further 3 weeks. He stuck to scandishakes after that then slowly got to creme caramel and custard and sweet wet things. He only had TX though. I hope you are doing ok. It does get better all be it slowly. Cecilia
Girlfriend to Martin 49 years old at diagnosis Diagnosed with SCC unknown primary June 2008. Cancer found in single node Stage N2A (3 to 6cm). Tonsilectomy 16th june, Radical modified neck dissection left side 30th june. 30 TX radiotherapy ended 9th October First comparative study scan came back clear
| | | | Joined: May 2009 Posts: 132 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2009 Posts: 132 | Hi, all -
Thanks for checking up on me! I finished treatment on 8/26! Unfortunately, things have gone downhill since then -- I have had a LOT more pain than I thought I would and my energy has dipped to a new low. I do wonder if this is "normal"...Also, I have a yeast infection -- just started meds yesterday for that and am hoping that soon the pain will be better. For the first time since starting treatment, I have gone without "eating" (drinking protein drinks) -- have forced myself to take water, but that's all I can do. Now I know why people get a feeding tube! Of course, it's not an option for me at this point, but I'm looking forward to getting this pain under control enough that I can eat (drink Ensure, etc.) again.
I know I'm not supposed to feel better right away, but am I supposed to feel WORSE? I do better when I have a light at the end of the tunnel to keep my eye on, but right now I'm really in the dark...
Also, has anyone else out there had -- yuck -- mucous that tastes like dead animal? It's unbearable, and I hate to think what my breath smells like.
Chrissy
Stage 2 SCC upper right palate Hemi-palatectomy and maxillectomy 5/28/09 Six teeth gone IMRT x30 starts July 13. Completed 8/26/09 Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
| | | | Joined: Jun 2008 Posts: 148 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2008 Posts: 148 | Chris, it is awesome to finish tx but the few weeks following are no cake walk and frustrating as you think you should feel a heck of a lot better than you do. You are now topped out with radiation so the mucous, awful throat, and other such wonderful side effects are par for the course. It just takes time for the body to recover and tougher ( I think ) in your case since you do not have the PEG to pour down nutrients, etc. Every day though is a healing day - good luck!
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | Joined: Aug 2009 Posts: 21 Member | Member Joined: Aug 2009 Posts: 21 | Chris,
Not sure if this will help but I'm one week out of treatment and hit my all time low. The mucuous is definately the worst part. I have found MAJOR relief with morphine patches. They are costly (my cost was $111) but it stays on for 3 days and that cost was a 5 pack, so 15 days of relief. It doesn't cure the mucuous or the inability to eat but it sure does put you in a better mood. I feel almost like myself again as I'm getting through this...good luck!
Belinda Jo- Age 28 non-smoker, casual wine drinker, original tx 5/09, T3/N2 (now N0)/M0, 2 tongue surgeries partial glossectomy, Rad x 35 treatment began 7/8/09, no chemo, neck dissection 11/25 revealed 12 benign nodes!
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Chris, I don't care how you do it, but have got to get the Ensure Plus or better yet Carnation VHC down and you need to get at least 4 down a day. Your body needs all the nutrition it can get so it can heal. Get some pain meds if that is what you need. Try the seltzer water for the mucous.
Yes the radiation keeps on working for several weeks after the treatment is over and yes you do feel worse for the first couple of weeks, but then it starts to slowly get better. Your job at this point is to stay hydrated and get as many proteins and calories in you as possible. No wonder you are tired if all you are doing is drinking water. I too went through this without a peg so I know what you are facing. If you are using Ensure, I hope you are using Ensure Plus. Its is 350 calories and 13gm of protein but VHC is 550. The idea is to get the most calories per sip. Good luck. You CAN do this.
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
| | | | Joined: May 2009 Posts: 72 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: May 2009 Posts: 72 | Chris,
hang in there. My husband is just coming out of the 2-3 week post radiation and it was a very rough road. I think it was the hardest part of the treatment...but it will get better. As soon as the radiation starts to wear off you will start healing. He took a lot of morphine to get through it. He is now not on any pain meds and his mouth is finally healing. Take whatever pain meds you need and keep hydrated. There is a light at the end of the tunnel. Sending lots of prayers and hugs.
Vanessa
Jeff age 49 DX 5/8/09 Tonsil cancer T2N2BMO. Tonsillectomy 5/14/09. TX: Cisplatin 3x's every 21 days w/ 33 Rad concurrent. 2-3 nodes on right neck affected. PEG 7/10/09. Chemo/rad start 6/12/9, TX finished 7/28/09. Extended TX 3 more chemo/Cisplatin/5FU/Docetaxil start 9/11, Clean PET 10/29/09.
| | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | Chris: Congratultins on finishing treatment. Unfortunately, the 2-3 weeks after treatment ends are usually the worse.
As Eileen said, you definitely need to take in nutrition during this time. Do you have Magic Mouthwash. It really helps. Also the Fentenyl patches do also.
Hang in there. Things will start getting better.
Sandyst
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0. Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09. OCF member/supporter
| | | | Joined: May 2009 Posts: 132 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: May 2009 Posts: 132 | Thanks, everybody. I am going back to the RO today to see if there's more we can do about the pain; he gave me Dilaudid, but it just isn't doing the trick. I wish I could accept that these will be the hardest weeks...I was so ready to be DONE! My biggest disappointment is not to be at school teaching my new students when that's all I want to do -- join the "real" world again.
I'm glad I have all of you to keep me on track...this is such a great community!
Chrissy
Stage 2 SCC upper right palate Hemi-palatectomy and maxillectomy 5/28/09 Six teeth gone IMRT x30 starts July 13. Completed 8/26/09 Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
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