@justwow I was stunned when I was first diagnosed via CT scan and biopsy as I was asymptomatic. It took almost a month for me to see a local radiology oncologist. During that time my emotions were a roller coaster. The oncologist was very blunt about his treatment plan which included a prophylactic feeding tube. Something did not sit right with me after that. I shifted from being upset about my diagnosis and treatment to being proactive in doing research to choose the best treatment and care team for me. I switched insurance to a PPO that allowed me to be treated out of town. I set up consultations with 5 top cancer centers and found out about proton therapy. My focus became on how treatable and curable this cancer is. I know the side effects are pretty miserable, but there is a positive end to focus on. You get through treatment day by day. It will end and you will improve.
Many folks on here went through treatment before the advances we can now take advantage of.
If you are a person of faith lean into that. If not, take comfort in the science. Don't focus on the short term pain and discomfort. It is truly doable. I expected worse. My goals were to go to treatment, follow my care team's instructions and rest as much as possible. I ultimately went out of town for treatment and stayed in a hotel for 2 months.
Just get your final diagnosis and treatment plan settled to your satisfaction and move forward. We are all here to provide what support we can
God bless!
@justwow I agree with Metsgirl comments. Very little adverse lasting effects. During treatment I lost all my taste, saliva production went down almost completely, Dry mouth, sores in throat, Very difficult to eat/swallow, Radiation burns to the neck. However, Two years out I am 95% back to normal. I have some slight scarring inside at my throat at base of tongue but It doesnt really effect me. No outside scars and My appearance hasn't changed other than I cannot grow bread where I was treated. You are going through a very scary time as you have alot of unknowns. Your outcome will be excellent but the 6 month journey will not be so pleasant. Hang in there as most everyone on here has been in your shoes and We are doing well! Good speed.
@justwow Hello, if it will be a help let me pass you my experience; I had radiotherapy all the way and rejected any intervention but as a result after 3 years i have developed Radiation Induced Bracial Plexus in other words I have lost the ability to use my arms.
During and after radiotherapy for some time I couldn't swallow, taste etc. but within the following 6 months I was over 80% recovered from everything until one day(3 years later) I started feeling tingling on my neck and within next 18 months I have lost the ability to use my arms. So there is no guarantee also for Radiotherapy, nevertheless I have been told that a cut can heal but for a burnt nerve there is no coming back; I really want to verify this with the doctor that has given you the heads up on this matter, if you could pass me his/her details I would like to get in touch with him/her because whenever I talk to a doctor about RIBP they seem to be surprised, I have never met a doctor that is aware of this side effect.
In short, if I would go back in time; initially I wouldn't like to go trough this but since it happened I would go for an intervention since the side effects are more or less proceeds the same way.
First, thank you *all *in case I haven’t responded to any individual post yet. Everyone’s responses here are very valued. ❤️
@jfh1970
Thank you for sharing your journey so far-
How bad were your mouth sores? Was the pain from the sores and the burn bearable? Did you take/receive anything for the pain?
I’m thinking more and more of allowing myself to become a crispy tater, vs losing my ability to hold my grand babies, etc
@justwow It hurt a lot, but that doesn’t really start until the third week of treatment. I got through it with Tylenol and Gabapentin. Docs prescribed optiates too, but I didn’t think they helped much and I don’t like the “buzz” they produce (never understood their recreational appeal).
All in all I am very pleased with the proton / chemo approach. There’s a reason it’s the frontline treatment for HPV+ SCC.
@justwow It hurt a lot, but that doesn’t really start until the third week of treatment. I got through it with Tylenol and Gabapentin. Docs prescribed optiates too, but I didn’t think they helped much and I don’t like the “buzz” they produce (never understood their recreational appeal).
All in all I am very pleased with the proton / chemo approach. There’s a reason it’s the frontline treatment for HPV+ SCC.
@jfh1970
Thank you so much. I’m just wondering why they are recommending that I do the surgery maybe it’s because I have two lymph nodes already affected. I don’t know. I think I’m going to schedule a multidisciplinary consult and see if they can help me decide on what’s really best for me. I’m just deathly afraid of losing the ability to hold my grandbabies and I have three of them under two years old. I have 10 in total and they all come for hugs and want me to pick them up and do things with them and I don’t wanna lose that ability.
@jfh1970
Thank you so much. I’m just wondering why they are recommending that I do the surgery maybe it’s because I have two lymph nodes already affected. I don’t know. I think I’m going to schedule a multidisciplinary consult and see if they can help me decide on what’s really best for me. I’m just deathly afraid of losing the ability to hold my grandbabies and I have three of them under two years old. I have 10 in total and they all come for hugs and want me to pick them up and do things with them and I don’t wanna lose that ability.
@justwow The Mayo team believed the metastasis to my left lymph nodes were too extensive to risk surgery. Plus most surgeries end up needing radiation chemotherapy anyway. HPV+ SCC is very susceptible to radiation.
Ask the team if their institution is participating in the DART 2.0 trial, which tracks the DNA marker of the cancer cell death. Mine dropped to zero by week 4 and I was able to stop a week later (two weeks early - meaning fewer and less severe side effects).
@justwow The Mayo team believed the metastasis to my left lymph nodes were too extensive to risk surgery. Plus most surgeries end up needing radiation chemotherapy anyway. HPV+ SCC is very susceptible to radiation.
Ask the team if their institution is participating in the DART 2.0 trial, which tracks the DNA marker of the cancer cell death. Mine dropped to zero by week 4 and I was able to stop a week later (two weeks early - meaning fewer and less severe side effects).
The chemo for HPV+ SCC is very low dose. It’s really just used to make the cancer even more sensitive to the radiation whixh does most of the work. I had no nausea and lost no hair. Really not that big of a deal.
@justwow If you click on the person's @name, this will take you to information about that person. Next to their profile picture or blank is a box to send a personal message. Click on that and follow the instructions.
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@metsgirl
May I ask where you went please?
@jonesja
How do we send private messages here?
@burakb
May I ask where you were treated? Was it your neck?
@justwow It hurt a lot, but that doesn’t really start until the third week of treatment. I got through it with Tylenol and Gabapentin. Docs prescribed optiates too, but I didn’t think they helped much and I don’t like the “buzz” they produce (never understood their recreational appeal).
All in all I am very pleased with the proton / chemo approach. There’s a reason it’s the frontline treatment for HPV+ SCC.
@jfh1970
Thank you so much. I’m just wondering why they are recommending that I do the surgery maybe it’s because I have two lymph nodes already affected. I don’t know. I think I’m going to schedule a multidisciplinary consult and see if they can help me decide on what’s really best for me. I’m just deathly afraid of losing the ability to hold my grandbabies and I have three of them under two years old. I have 10 in total and they all come for hugs and want me to pick them up and do things with them and I don’t wanna lose that ability.
@justwow The Mayo team believed the metastasis to my left lymph nodes were too extensive to risk surgery. Plus most surgeries end up needing radiation chemotherapy anyway. HPV+ SCC is very susceptible to radiation.
Ask the team if their institution is participating in the DART 2.0 trial, which tracks the DNA marker of the cancer cell death. Mine dropped to zero by week 4 and I was able to stop a week later (two weeks early - meaning fewer and less severe side effects).
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Thank you for this information 🥰
My daughter had chemo for Hodgkins and she strongly cautions me to not go that route.
Let’s say I’m lost right now…
The chemo for HPV+ SCC is very low dose. It’s really just used to make the cancer even more sensitive to the radiation whixh does most of the work. I had no nausea and lost no hair. Really not that big of a deal.
@justwow If you click on the person's @name, this will take you to information about that person. Next to their profile picture or blank is a box to send a personal message. Click on that and follow the instructions.
@justwow yes it was on my tonsille and and lymph nodes, I have been treated in Italy and in Turkiye...