| Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | When my husband got his peg tube, he was asked to first swallow the "lead" -- something that's going to be hard to do when the throat and mouth are really sore.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Jun 2013 Posts: 32 Likes: 1 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2013 Posts: 32 Likes: 1 | Well I am two weeks done (yay - 1/3!!) and am still doing well. Lost a few pounds during chemo but think I have stabilized this week. I know the sore throat will come next week, and am prepared for the PEG if need be, but for now am holding out. Bummer thing is that my taste is already all messed up (not gone; i say messed up b/c I don't know how else to explain it!). Sweets are still ok but anything salty/crunchy is like eating cardboard since I can't taste the salt. Anyway, forcing down what I have to and trying to hang in there as long as possible. Here's to being 2 weeks done, and to a reasonable next 4. Thanks all for the input as always!!
Laurie 42 yo Pediatrician No smoke, social drink, HPV neg May 2013 - SCC Right lateral oral tongue - stage 1 (T1N0M0) Partial hemiglossectomy and sentinel node bx NEG NED 5/29/13 3/2014 - Cancer back (never gone) in one right sided cervical node Modified neck dissection 3/2014, N1 with microscopic ECE,39 nodes neg 30 Rads and 2 cisplatin done June 13! PET in 3-4 months but no clinical cancer and I'll take it!
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | The time goes really quickly with this sort of treatment gobbling up the days and weeks. I'm just about through and don't know where the time has gone. It will be so nice to say goodbye to the mask on Monday and to one day taste savoury things again.
Good luck with the rest of your treatment and may the days fly by.
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Jun 2013 Posts: 32 Likes: 1 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2013 Posts: 32 Likes: 1 | alpaca, you must be done now! Congrats! Cannot wait to be in your shoes. The loss of salty taste is about the saddest thing ever! Not really - but you all know what I mean. I keep reminding myself that cancer cells are dying with those taste cells! Anyway let us know how you're doing!
Laurie 42 yo Pediatrician No smoke, social drink, HPV neg May 2013 - SCC Right lateral oral tongue - stage 1 (T1N0M0) Partial hemiglossectomy and sentinel node bx NEG NED 5/29/13 3/2014 - Cancer back (never gone) in one right sided cervical node Modified neck dissection 3/2014, N1 with microscopic ECE,39 nodes neg 30 Rads and 2 cisplatin done June 13! PET in 3-4 months but no clinical cancer and I'll take it!
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Yes, I'm finished, feeling a bit blah and sitting here at 9.32 am in my dressing gown. I've been warned countless times that the radiation keeps working for two weeks so that's my goal now. I crossed the treatment days out in black pen and will use a red pen for the 14 post-treatment days, knowing that it could take less time for my energy to return. Unfortunately the taste buds don't recover for a month, the dietitian told me. I'm getting used to no taste though and find the Fortisip (like Ensure) milkshakes quite soothing on my mouth. All is not lost!
Wishing you well. The time will pass before you know it:)
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Jun 2013 Posts: 32 Likes: 1 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2013 Posts: 32 Likes: 1 | Good for you. Sounds like you tolerated it quite well overall. I am unfort already struggling with mucositis, but have been able to get my shakes down so far, with the help of Magic Mouthwash  Let us know how your next couple weeks go! Wishing you all the best for recovery!
Laurie 42 yo Pediatrician No smoke, social drink, HPV neg May 2013 - SCC Right lateral oral tongue - stage 1 (T1N0M0) Partial hemiglossectomy and sentinel node bx NEG NED 5/29/13 3/2014 - Cancer back (never gone) in one right sided cervical node Modified neck dissection 3/2014, N1 with microscopic ECE,39 nodes neg 30 Rads and 2 cisplatin done June 13! PET in 3-4 months but no clinical cancer and I'll take it!
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Laurie, I found that viscous lidocaine was essential to helping me get the liquid nutrition down. Assume you've got some or have considered it.
And Alpaca: congrats! I wish you the best in your recovery and will be sending healing thoughts down your way.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Congrats on finishing your treatments!!!!
Time to rest and let your body recover now. Keep pushing yourself with the higher calories and hydration every single day until at the least you hit the one year mark.
Best wishes for a speedy recovery!!! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Alpaca... hon... sadly your dietician is misleading you. Your taste will return when it's good and ready and probably has it's own time table. You may get some taste within a month but truthfully it took me a lot longer to recover my taste and my sweet is still not operational - though I get hints here and there. For me the least horrible tasting (even now - 3 years out) is natural foods. Processed foods taste a lot like the crap they put in them... essentially chemical stew. Horrible. Pop is disgusting even now. So be patient with yourself - it will take some time. HUGS.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Here's a ringing endorsement of Cheryld's comments on the return of taste.
I've had a smorgasbord of Chemo agents, and the one thing I found that all had in common was that they mess with your taste. Beyond that, the taste-function that is working often mangles the flavors it does detect, and overall, the return to normal can be VERY slow.
I completely lost my sense of taste back in '09 when I was getting Cisplatin. It had only returned to about 50% by the time my first recurrence showed up and was treated with a cocktail of Carboplatin and Taxol (later changed to Taxetere to preserve my diminishing hearing - all chemos I've experienced also take chunks out of your hearing also. I found that many of the flavors that I'd recovered were now gone again.
I don't mean for this to scare you, just the opposite. I haven't had any chemo for about a year now, only forms of radiation, and I'm probably back to nearly 90% in the taste area. However, some flavors, steak especially, (still) fade away before I reach the end of the portion I'm eating.
The good news on that is that even those flavors are fading later in the process so I expect full return in time.
But some flavors seem to have returned markedly changed; and others (like high fructose corn syrup) have become strong enough to over-ride whatever artificial flavoring agent they use (e.g. pancake syrup's fake maple flavoring) and, while I never detected the HFCS previously, I find I cannot stand it today and that ruins anything sweetened with it. Overall, that's a big PLUS for me!
I used to live fresh, hot french fries. They have lost their appeal entirely. Win!
As Cheryld said, fresh veggies were among the first flavors to fully return to detectability, they have remained unmodified and do not fade. Fresh fruits the same.
So in the final analysis, taste return at its own pace and not always completely; but the upside is that it seems to favor healthy real food over junk.
Overall, not a bad deal in my book. Your experience will vary in the details and fine print, but I think if you can keep your sense of perspective, you'll find this more a minor annoyance at worst, and even a beneficial one at best.
Good Luck,
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
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