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#200582 12-14-2020 06:44 AM
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tlc356 Offline OP
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I am an oral cancer survivor and recently had Mohs surgery on my lip that removed SCC. To deter recurrence I am about to start 5 days a week,6 weeks of targeted radiation on my lower lip and infused Erbitux.
If you have experienced this treatment, I would appreciate hearing what you've learned. Either post here or send me a message. Thanks in advance.

Last edited by tlc356; 12-14-2020 06:45 AM.

SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
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Hi, I had lip cancer, Stage III. I had a huge tumor on my right lower lip, and a small one on the left. I had a lip reduction to remove the large tumor, reconstruction, and a modified neck dissection...101 nodes removed. Followed up with radiation for 6 weeks. One of my surgeons recommended Mohs on the smaller tumor and the other surgeon recommend that since we were already radiating the surgical site that it would be easier and make sense to just radiate the left side instead of Mohs. I went with that option. I am now 3 months post radiation. Just had my 3 month follow-up with a PET scan. I did not have any chemo or other treatment, other than the radiation. They reported...no new activity! Now it's all about managing the side effects. My treatment was at the top comprehensive cancer care facility in California...City of Hope. There was never a talk about Erbitux, so not sure how necessary it is. I would ask about the stats if you only did the radiation. Did your Lip cancer spread to area tissues? I would do lots of research...maybe get a 2nd opinion. Make sure you get all the info you need to make an informed decision that you are comfortable with.


Lip Cancer
Stage 3
T2 N0
Lip resection, reconstruction
Modified Neck Dissection
30 radiation treatments (last day 9/11)
Starting Physical Therapy on my neck
Barium Swallow Test after Thanksgiving
1st post op PET scan scheduled for beginning of December
Going thru it physically alone during the pandemic 2020
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tlc356 Offline OP
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Erbitux monoclonal antibody treatment along with 6 weeks of radiation was approved by the FDA for Head and Neck cancer in 2016. Last week I received my first infusion without side effect and I started radiation yesterday, again without side effect. The goal is to prevent recurrence of SCC that was removed from my lower lip with Mohs surgery. The surgeon reported clear margins, but the team is concerned about potential recurrence because of the cancer proximity to nerves and muscle. That proximity presents a rate of recurrence estimated around 25-30%.

Of course, prior to treatment, I received a long list of possible negative reactions and I'm sure they "throw in the kitchen sink" because they can't know how different patients react. So far I've experienced nothing bad.

I will report back on the progression of the treatment and what I experience.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
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The first few days of radiation are not a problem. Depending on how many grays (units of radiation) you are getting, you will start to feel discomfort the second week. Even so, it’s doable and I wish you smooth sailing.


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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tlc356 Offline OP
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I have finished 4 of the 6 week course of treatment and can report that I do not appear to have any reaction to the treatment (other than possibly feeling a bit colder than usual which is easily fixed with an extra fleece). The radiation area below my lower lip appears sunburned. The area is a little sore but I have no difficulty eating and I'm maintaining weight.

So far the long list of potential issues has not come to pass.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
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I believe it depends on how much radiation (how many grays) you are getting. For example, when my husband got his first treatment, it was 70 grays given over 35 days, so it’s 2 grays each day. Then when he needed some more radiation later, he was given 20 grays over 5 days, that’s 4 grays a day. I asked the RO and that’s what he told me. The second dose would actually be stronger.

I’m not saying you will have a lot of side effects, I just think it’s good for you to know.


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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tlc356 Offline OP
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The six week procedure is now completed. My lower lip has "sunburn" and they tell me it should start to clear up in a week or so. My mouth is aggravated by spicy foods and mint toothpaste, but I eat well and have not lost weight.

There appear to be two reactions to the infusion; 1) Small "paper" cuts on my fingers. 2) My body temp seems to be lower and I'm wearing more sweaters and fleeces than ever before.

None of the many predictions of fatigue etc. etc. that had the potential to slow me down, ever came to pass. I know that it is important to warn people of any potential reaction that may happen, and I'm glad to say that in my case they just didn't come to pass.

I never did learn how many Grays of radiation I received.

Last edited by tlc356; 01-30-2021 08:56 AM.

SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
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Posts: 1,258
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You are doing extremely well if you are eating spicy food at this point! I’m so glad for you. Here’s to a speedy recovery for the sunburnt lips.


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: Feb 2015
Posts: 112
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tlc356 Offline OP
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Three weeks out and while the sunburn lips are bleeding less at night, they are improving. Mouth and lip pain, especially while eating has not gone away yet and much to my dismay hasn't even diminished.

My skin acne-like issues are slowly improving as are the finger paper cuts.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356

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