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"OCF Down Under, Kiwi"
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"OCF Down Under, Kiwi"
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When I was at peak pain level during radiation I could not tolerate any fruits at all. I used to add milk to my formula (Fortisip) and some chocolate ice cream and syrup. A banana added was stingy and painful. Tinned peaches hurt. When taste went the chocolate enriched Fortisip was the only thing I could tolerate. I didn't look to see if Fortisip had corn syrup but it sure did the trick in getting me through radiation with minimal weight loss and bearable side effects. I lived on it for a few months and felt fine without any normal food. A live-wire member of my local support group survives on it alone. I hope it isn't contributing to the destruction of the rain forests but when your health is on the line it seems sensible to consume what the dietician recommends. As for the health effects of the these artificial substances .... Hmmmm. In the grand scheme of things, we have cancer, the treatment is brutal, and if we want to survive we have to allow ourselves to be zapped by radiation and poisoned by toxic chemicals.
As for my diet now, I'm not so proud of it. My blender and juicer get a workout but I need to add more vegetables to my diet.


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: Nov 2014
Posts: 66
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Posts: 66
I finished my treatments last Friday and this week has been hell. Everyone was right, that it was going to get a lot worse before it got better. It's been so hard to eat or drink anything. So much awful with phlegm balls of blood, dryness, razor blades in my throat and all over my tongue, giant sores, bubbles & blisters popping up. Sometimes, I have to grip the rail in the bathroom until the pain passes. I am over the hump though. They were giving our free meatballs at costco yesterday, and I ate half if one. It was really soft & mashed up. First thing like that in so long.

We did buy a vitamix and tried all those shakes, they hurt so much. It's like a thick ball of chalk that gags me and I cough. I've found I need thinner drinks; almond milk, lots of honey in lavender tea, Orgain and broth soup. I can get down a yogurt if it's not the thick type and I have tea with it. I take pain pills before I eat and gargle with different things the doc prescribed to help. The only other thing I can scarf down is amazingly scrambled eggs with cheese and spinach with no stems cooked in olive oil until yesterday's meatball.

I'm managing, still not below the weight I started at when they told me to gain all the weight. I hope these treatments work, I won't know anything for weeks about the tumor but I've got a lot of hope.

I love you bees for making that honey
I love you chickens for those lovely eggs
I love you cows & goats for your dairy products
I love you beekeepers & farmers for making it happen
I love all of you who have been kind and advised me here
I love all of you who have to go through any of this


HPV+ P16 positive squamous cell carcinoma

Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
Joined: Sep 2014
Posts: 87
Likes: 2
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Supporting Member (50+ posts)

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Posts: 87
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Sorry to hear that you had a rough time with the treatments. Happy to hear that you were able to eat something solid, even if it's only half a meatball. Small victory, and indication of advancement to come!


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
Joined: Jan 2013
Posts: 1,291
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Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
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It is tough sledding but you seem to be doing pretty well. Just add more liquid to make the blender drinks less thick. If you are able to eat this much solid food you are doing great! Hang in there.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Apr 2014
Posts: 236
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Posts: 236
QueenKong

Sounds like you had a rough ride through treatments. My mother had similar side effects. She actually had to be hospitalized several times. Now that you have finished your treatment you should began to slowly recover.

There were times when my mother couldn't swallow anything because of the swelling. When she could swallow it had to be something very thin.
I would add water to some soups because of the thickness. Even different shakes had to be made thinner.

On a brighter note you can now move forward and prayers for a clear scan.

Good luck
Heidi

Last edited by sweetpe1; 02-28-2015 12:01 AM.

Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Nov 2014
Posts: 66
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Posts: 66
I was feeling better yesterday but today I feel just horrible, so much nausea with a bad headache and I don't know why. I feel like I want to vomit. My family is trying to get me to go out but I am afraid to move because I think I will throw up. Maybe I have a virus? ugh.


HPV+ P16 positive squamous cell carcinoma

Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
Joined: Apr 2014
Posts: 236
Gold Member (200+ posts)
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Gold Member (200+ posts)

Joined: Apr 2014
Posts: 236
Precription Zofran seem to work well for the nausea/vomiting . The side effects from treatment seem to carry on for quit a while. I hope you feel better soon.

Heidi


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
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"OCF Down Under, Kiwi"
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Joined: Nov 2009
Posts: 644
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Anti-nausea meds?

I'm so glad you have finished treatment. I know it's hard to get through but in another couple of weeks or less you should feel much better.

I hope you have another half a meatball day soon.



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: Oct 2006
Posts: 383
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Oct 2006
Posts: 383
Queen Kong, Congratulations!!!!! You made it through and now every day will distance you from where you have been! Just remember that, you're doing great! Radiation is "The gift that keeps on giving!" You will have a go of it for a while and everybody heals at different levels and time lines. Just keep trying, pushing yourself, and experimenting. Trust the folks here when they say it will get better. I had Cisplatin eight years ago and it's effective but man it's packs some punches to get there, nausea being its strong suit! I would inquire about the anti-nausea meds that Heidi and Alpaca mentioned. I'm sure you already are taking some but it would be worth inquiring as to dosage. Prayers for you and Best Wishes!


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

Joined: Nov 2014
Posts: 66
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Joined: Nov 2014
Posts: 66
Thank you everyone for you words of support. I made it through that horrible day. I did have some anti nausea meds, I took more as you all recommended, I had an extra one. I didn't vomit.

I had fluids at the hospital yesterday and am feeling better. I ate a fish stick on Sunday night and had a little beef stew yesterday so I feel I have turned a corner. Went for a walk in the snow on Sunday too.

This mantra of "It's going to get better", I repeat that to myself a lot. Especially on those days I was gripping the towel bar in pain after hacking up those blood balls in the middle of the night. I can open my mouth now without ripping open a blister and bleeding, that's progress too.

I am going to go to Bjork opening tonight. Resting all day so I can make it.



HPV+ P16 positive squamous cell carcinoma

Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
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