| Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | With 24 treatments down and 6 to go I'm beginning to understand what this is all about. I just don't feel myself. It follows a different arc to recovery after surgery which has been my forte in recent decades. I'm going to put pen to paper tonight and figure out some strategies and philosophies and mantras to help me get through at least the next three weeks. It's like all of us. We have big surgery, start to recover from that, then wham, chemo, radiation or both.
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 2007 Posts: 10,507 Likes: 6 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: 6 | Right about now is when the struggle really begins for most patients. The last week is the hardest one to get thru. Even though rads continue to work even after the patient finishes in my opinion the final few days of rads were harder. Thats when I attempted to quit my treatments so I could just stay home in bed until I felt better. Its didnt work out as my son and nurse insisted I finish every single one. Just keep telling yourself "this too shall pass" and all those other encouraging sayings.
If you can get hydrated in the chemo lab, that would really help you alot. I always felt so much better whenever I got hydrated with a couple bags of saline. Here in the US, it takes a doctors prescription to get hydrated. Hydration is not offered, you have to ask for it.
As far as calories go, Im sure its getting pretty difficult to hit the magic numbers of 2500 calories and 48 - 60 oz of water every single day. I know if you push yourself and have a day where you take in about 3000 or even 3500 calories and 60 oz of water, it will help you to feel better too. I know its really hard to do but by pushing yourself to take in more it really will help.
Hang in there!!!
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: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | thank you Christine. You really keep me going!!!
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 2007 Posts: 10,507 Likes: 6 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: 6 | You're welcome!
I know its not easy and often OC patients can feel hopeless. Towards the end of rads is the part where it really starts getting hard. Hang in there, I have faith in you that you will get thru this.
We are here to lean on when you need us. 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: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | You will get through it - planning ahead is a must near the end but you are doing so well. Blessings to you.. And many hugs. Remember think of what would make you feel better as you go through this and try to employ some of those tactics.
Last edited by Cheryld; 05-12-2014 06:50 AM.
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: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | I agree with Christine with respect to the IV hydration, especially at this point.
Also, be sure to stay on top of your pain levels so as not to let them get out of control. I had a palliative care team taking care of me. They help to manage a cancer patient's pain, not just end of life issues.
Best wishes. I know how hard it is and I am so sorry that you are there right now. Just remember, this will save your life, even though it feels like it may be killing you at the moment.
You will be in my thoughts. If you've made it this far without a PEG, then I applaud you. I think I had one place during the third week.
In good health, Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Thanks, people. Remember that I am not having chemo so my issues are not as bad as some people's. Unpleasant all the same but having had chemo by itself 18 years ago, I can imagine how it must add to the mix of nasty side effects.
Only four more treatments to go! Don't feel quite so bad tonight - maybe because staff were quite encouraging today. Had my weekly visit to the radiation oncologist who said that it might not get much worse after this week. Ray of hope. Keeping on top of the nausea.
I'll consider the hydration if I'm in dire straits but right now it's up to me to keep drinking.
Love to all maureen
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 |
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: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Three days to go and I've picked up a bit. Not feeling so deeply unpleasant. My skin's really red but they say it's in good condition considering the number of treatments I've had. I've got thrush but can't feel it the way I normally do. Whether it's because of the numbness in some of the area or the Oxycontin I take am and pm, I don't know.
The slight improvement could be because I've increased the anti-nausea meds or because the staff have been very encouraging. Maybe because I have another of my sons working from home at my place this week. I guess I feel better when the conditions around me are more congenial.
Dietician has suggested that I try to eat something with texture like a weetbix (cereal biscuit that can be softened with milk). I can't stand the taste and feel of oatmeal right now.
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: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Try Bran Buds in Yogurt. This will help with the texture you need plus the thrush. Even though you can't feel it right now, get the thrush under control - it is painful and nasty once you do feel it! The medication for it doesn't taste badly, and is fairly inexpensive and effective. Hugs. You WILL get through this, and the sun WILL shine again!
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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