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#200117 05-05-2020 05:32 AM
Joined: Jun 2019
Posts: 237
"OCF across the pond"
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"OCF across the pond"
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I'm now 6 months post rads and I can't believe how much better I feel. I still get a bit of mucus in the morning, but I find that I can clear it with my breakfast smoothie.
I have more energy, which is great, but I go through periods of fatigue. I've seen that cancer patients get the fatigue periods for a few years after completing rads and chemo.
My 2nd CT scan was clear. I do have a small lump in my neck, but it's unchanged from my last scan in Jan.

I've not used my G-tube in over 6 weeks. Unfortunately due to C-19 my tube has to remain until July at the earliest. Frustrating but understandable. I'm still trying solid foods but I do eat a lot of soups and ice creams. My weight has stabilised though.

My speech is fantastic. My speech therapist said that it's exceptional considering I have no tongue and was originally told I would never speak unaided. Determination and singing badly to the radio has really helped. I can now hold a conversation on the phone, with a stranger. I just can't say my own surname though grin

My sister and I have booked an all inclusive holiday to Portugal. Hopefully we'll be able to go.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Joined: Oct 2012
Posts: 1,270
Likes: 5
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Really great news! You are obviously doing very well. The tube is only a minor inconvenience compared to all that you’ve been through.


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.
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CONGRATS DIZ!!!!

Thanks for posting your uplifting update!!! smile

You are a shining example of someone who went thru heck but still managed to overcome the side effects and did everything possible to make progress in and uphill battle with speaking and eating that's paid off, tremendously. Excellent attention to detail has helped you get thru everything. Im sure theres lots of newer members who have recently discovered our sight reading your posts and learning tips on how to succeed.

As always, Im wishing you all the very best with all your endeavors. Hope you stop by once in a while, your posts are excellent motivators for those in the middle of their fight. Im already looking forward to your next update smile

Be well smile


Christine
SCC 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 smile
Joined: Jun 2019
Posts: 237
"OCF across the pond"
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"OCF across the pond"
Gold Member (200+ posts)

Joined: Jun 2019
Posts: 237
Thank you Christine and GM. I really appreciate your comments.
I'm now off of the pembrolizumab trial, with 5 doses to go. Unfortunately my body isn't producing some hormones or cortisol and my BP keeps dropping. The root cause analysis pointed to the immunotherapy drug, so to protect me, it's been permanently stopped. Now we're trying to find out if the loss of hormones and cortisol production is temporary or permanent. Some bloods will happen on Tuesday 26th and I'm waiting to see an endocrinologist to find out more.

Other than that I'm still doing well. Still trying different foods etc. I'll keep popping in because you all mean a lot to me and this forum has so much valuable information . I just can't give you all up.

Hope you all staying safe.

Oh quick high calorie milkshake..chocolate ice cream blended with full fat milk (in UK we also have gold top milk which is higher in fat. I drink 3 litres a week) hazlenut chocolate spread, hersheys chocolate syrup, single cream (your half and half I think) and a chocolate ensure. Utter bliss.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Joined: Oct 2012
Posts: 1,270
Likes: 5
Assistant Admin
Patient Advocate (1000+ posts)
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Joined: Oct 2012
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You are drinking (!) that shake? Wow, that’s a huge improvement from needing a tube. I hope they get to the bottom of what’s caused your PB to drop. Are you on a drug trial? Whatever, I hope it’s all smooth sailing for you from now on.


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.
gmcraft #200152 05-21-2020 01:43 AM
Joined: Jun 2019
Posts: 237
"OCF across the pond"
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"OCF across the pond"
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Joined: Jun 2019
Posts: 237
Sometimes I drink that shake if I know I've not eaten enough. At the moment, an average daily menu is a homemade smoothie for breakfast (between 550 - 600 calories), lunch is a home made soup plus an ice cream or 3 chocolates from a box and a cup of tea, dinner is a canned soup, a yoghurt, some jelly (jello) made with ensure. I might have a snack of some more ice cream with chocolate or raspberry syrup, or some biscuits with a cup of tea.

My husband gets me to try some of his dinner. Last night I tried some lamb sheek kebab (minced lamb and mint of a stick). That was good, but I needed mint yoghurt to help it down. At the weekend we're going to have a little buffet. I have dips (hummus, sour cream and chive, aubergine dip, guacomole) and some nibbly bits like sausage roll, cherry tomatoes, mini corndogs, fresh peppers, thick cut chips (fries), rice crisps (chips) etc, just to let me try different things. I'll have lots of water with me. If I can't eat it, then my husband will have a great meal for a couple of days. I always have some Ensure in the fridge as back up, it's especially helpful if I'm too tired to eat.

I haven't used my feeding tube in 8 weeks. I flush it every day with water and that's it. I can't wait to get it removed.

At the moment they're testing me for Addison's Disease, which is where the body stops producing cortisol and other hormones. It causes a drop in BP, nausea, fainting, lack of appetite and some other bits. Fingers crossed its all temporary though.

I was on a an immunotherapy trial.I had 2 doses before surgery to see if it would shrink my tumour, and then I was supposed to have 15 doses post surgery, over 12 months, to work as a preventative against it all coming back. I got sick and the trial was stopped at dose 10 when they realised it was the immunotherapy causing me to be unwell. As I'm not getting better without steroids, my team have decided to stop the drug.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients

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