Previous Thread
Next Thread
Print Thread
#196656 06-27-2018 08:08 AM
Joined: May 2018
Posts: 32
Likes: 4
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: May 2018
Posts: 32
Likes: 4
I am disappointed that my 2nd chemo has to be postponed from tomorrow to hopefully next week. My neutrophils are at 0.8 and they're supposed to be at 1.5. I think this means that I will be getting only 2 chemos (Cisplatin) instead of 3. My chemo doc said there is evidence that 2 chemos is better than 1, but there is no evidence that 3 chemos is better than 2. Is it okay to ask on this Forum if others have heard something like that? I'm thinking of it as a question on other people's experience, not a medical question. He also said that probably 70% of patients only end up getting 2 chemos. He also said that the lower dose once weekly is only really used for older patients. I'm 54, and I guess that means I'm young! There's a smile for today.

On a positive note, tomorrow will be the halfway mark for rads, 3 weeks. Radiation side effects are in full force I guess, significant pain on swallowing, and omg I woke up in pain 3x last night due to sores on my tongue. I've had the Princess Margaret mouthwash just since Monday, and although it's helpful I wouldn't call it magic that's for sure. I also have some hydromorphone pills still from surgery and they told me today it's okay to take them, and they're sending in a liquid prescription for me as well. I do have a feeding tube in but I hope that it ends up being precautionary only and that I never have to use it. I will say though that on the weekend was the first time I thought I would need to use it before this is all done. I am monitoring my nutrition intake carefully, especially calories and protein, and I am just starting to use the recipe for the high calorie chocolate peanut butter shake. It's too hard to eat anything that I can't just swallow right now. The stupid tongue sores make chewing almost impossible so then I chew a bit and swallow and that swallow is pretty bad.

Anyway I've been feeling kind of down for the last few days, but I'll be okay. Tomorrow is halfway there. Yesterday I ordered 3 CDs I wanted, music cheers me up.

That's all for now.

(Edited - maybe this should be in the Currently in Treatment Forum? Sorry, I'm not sure.)

Last edited by embishop; 06-27-2018 08:09 AM.

Mouth/tongue cancer dx Feb 2018.
Surgery Apr 2018, partial glossectomy, tongue reconstruction (radial forearm flap donor site), neck dissection.
Tumour 2.5 cm, 0.8 cm deep.
Histologic grade G3 Poorly differentiated.
3 of 25 lymph nodes involved max size 0.6 cm.
pT2pN2b (stage 4a)
Chemo Radiation June / July 2018. Completed 35 rads, 2 of the 3 chemos.
embishop #196657 06-27-2018 08:15 AM
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
You will find that quite a few people on this forum had to forego the third chemo. My husband had to because he developed serious deep veined thrombosis. His neutrophils were so low at that point that he couldn’t even get the medication fo the DVT. It did recover after a few days. The chemo doctor at Princess Margaret Hospital, who is a leader in her field, told me that he would be alright with only two chemo treatments. I also met other patients at the chemo unit there who could not get the third chemo because of the low neutrophils.


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.
embishop #196659 06-27-2018 09:24 AM
Joined: Jun 2013
Posts: 346
Likes: 3
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Jun 2013
Posts: 346
Likes: 3
Mine was the six weekly treatments, and I was in my later thirties ... guess that was old? LOL. I may have missed one, though, given weather issues and such, and for sure some got rescheduled.

Congrats on making it halfway!!!


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
gmcraft #196662 06-27-2018 11:07 AM
Joined: May 2018
Posts: 32
Likes: 4
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: May 2018
Posts: 32
Likes: 4
Thank you for that input gmcraft. I am up in northwestern Ontario so chemo and radiation is here but they couldn't do my surgery here. It's nice to hear of other experiences in Ontario since there can be differences between countries. PMH is great, I was glad in the end to have to go there although initially I wished I could have been at home for surgery too. Thank you also for continuing to share your support as a family member; my condolences on your husband's passing.


Mouth/tongue cancer dx Feb 2018.
Surgery Apr 2018, partial glossectomy, tongue reconstruction (radial forearm flap donor site), neck dissection.
Tumour 2.5 cm, 0.8 cm deep.
Histologic grade G3 Poorly differentiated.
3 of 25 lymph nodes involved max size 0.6 cm.
pT2pN2b (stage 4a)
Chemo Radiation June / July 2018. Completed 35 rads, 2 of the 3 chemos.
KristenS #196663 06-27-2018 11:09 AM
Joined: May 2018
Posts: 32
Likes: 4
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: May 2018
Posts: 32
Likes: 4
KristenS yes lol! I'm approaching a cutoff for 'older' now, 55 plus, but late thirties definitely doesn't qualify!!


Mouth/tongue cancer dx Feb 2018.
Surgery Apr 2018, partial glossectomy, tongue reconstruction (radial forearm flap donor site), neck dissection.
Tumour 2.5 cm, 0.8 cm deep.
Histologic grade G3 Poorly differentiated.
3 of 25 lymph nodes involved max size 0.6 cm.
pT2pN2b (stage 4a)
Chemo Radiation June / July 2018. Completed 35 rads, 2 of the 3 chemos.
embishop #196668 06-28-2018 04:44 AM
Joined: Dec 2017
Posts: 15
Member
Offline
Member

Joined: Dec 2017
Posts: 15
I’m 23 and also had the weekly treatments, so that can’t be right! smile

embishop #196669 06-28-2018 05:23 AM
Joined: Jun 2013
Posts: 346
Likes: 3
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Jun 2013
Posts: 346
Likes: 3
Nah, it's just that we all FEEL old when going through it, LOL. Heck, I was still getting carded if I picked up anything alcoholic for my mom (I don't drink) and I'd be out with my kids and folks would ask me where I went to school, LOL. Like, um, I finished college, worked for a time, got married and have kids ... do you mean their school? laugh


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
embishop #196672 06-28-2018 05:13 PM
Joined: May 2018
Posts: 32
Likes: 4
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: May 2018
Posts: 32
Likes: 4
I guess that's just the protocol at my cancer centre 😃


Mouth/tongue cancer dx Feb 2018.
Surgery Apr 2018, partial glossectomy, tongue reconstruction (radial forearm flap donor site), neck dissection.
Tumour 2.5 cm, 0.8 cm deep.
Histologic grade G3 Poorly differentiated.
3 of 25 lymph nodes involved max size 0.6 cm.
pT2pN2b (stage 4a)
Chemo Radiation June / July 2018. Completed 35 rads, 2 of the 3 chemos.

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5