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Introduce yourself Jump to new posts
Surgery after chemoradiation Pamj63 1 hour ago
I was diagnosed with hpv positive stage 3 tonsillar cancer (left tonsil) in November of 2021. It had spread to base of tongue and there was some lymph node involvement. Had quite a few teeth extracted due to concerns about later dental issues post radiation. I had a chemo port and peg tube inserted and started treatment at the end of December. Six weekly cisplatin treatments and 33 weekdays of radiation 69.96 gy. Treatments ended mid- February.

A CT scan at 2 months post treatment found a blood clot in my jugular vein. Started Xarelto then, clot is gone now. The 3 month post treatment PET scan in May, showed a small spot on my left tonsil. Doctors were in agreement to wait two months and have another scan. They reminded me how large the tumor had been at diagnosis. The second PET scan showed the spot was still there. There is also a cystic but necrotic lymph node remaining.

Went to see a specialist, and I will be having surgery. TORS left radical tonsillectomy, left neck dissection, left radial forearm flap, and a tracheostomy. My doctors are optimistic this will be curative.

I have been positive through this cancer journey, but will admit to a bit of fear popping up now and then regarding the surgery. My oncologist suggested I not worry about things that might not happen, and I have taken that to heart.

For those who have been on a similar path, any advice for me as far as recovery? I know we're all different, but am curious as to how long it takes to feel somewhat "normal" again. How long does it take to be able to use the flap donor arm? If you had a flap from your arm, did you regain full strength? Any thoughts would be appreciated. Thanks so much for this site and the ability to connect with others in a similar situation.
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Coping / Anger and Fear Jump to new posts
Re: teenager with possible ameloblastoma, terrified Nels Yesterday at 09:52 PM
Dear ACJ

Thanks for the follow up. Long process but overall some really good news here. Grateful is such a beautiful word. Every day is a gift and experiences like yours are such a reminder for all of us. Please do come back and keep us updated.

Also, keep in mind that you might be able to help with advice to others. Check the forum occasionally and chime in if you feel you can help.

Stay safe and keep the faith,
Nels
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Alternate feeding solutions, PEG Jump to new posts
Re: international travel with bolus g-tube Brian Hill 08-11-2022 06:10 PM
Most of the people that I have communicated with that travel extensively only take pre made foods for the air travel days. It’s a matter of convenience. But like me they bolus feed blended normal food with a syringe in their daily routines. We all think that with a little time spent understanding good nutrition, it’s a superior long term solution with the right blender to getting good nutrition, and maintaining healthy weight and digestive system.

Finding peg supplements in a foreign country without a local doctor to prescribe them is problematic, and blending real foods that you can find and buy in any market far simpler. If you had to take with you enough cans or packages of food for a vacation, it is a lot of stuff to manage and haul around from place to place. I can take my blender in a small overhead roll on suitcase, and a supply of disposable syringes, usually a couple for each the days of trip. They are also used from taking my crushed pills and meds. All that in one small roll on. I take some real food blend meals in foil packets for use in airports and the first night at a hotel if we are getting in too late to shop.

Any hotel room that has a mini bar can be emptied out and used for the perishable foods. But I blend lots of things like different nuts and some veggies and fruits that do not require refrigeration. I do take sone zip lock bags of whey protein to supplement that, if I haven’t found suitable protein sources in the city. Since this is what I’ve been pegging for years, there’s really no change in my diet, my weight gain is stable, and I eat healthier than anything out of a can, or how I used to eat before the PEG.

With some 20oz paper cups, I can blend a batch big enough to get me through two days. Often the hotel will allow me to keep it in their kitchen refrigerators, so blending is not an every day thing. If I don’t feel like doing it, I can always blend up a meal from a restaurant just thinking it with a little water or milk.

If you want to learn more about eating this way, I would be happy to help you navigate this transition. B
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Introduce yourself Jump to new posts
Re: Newbie Nels 08-10-2022 06:14 PM
Dear MLowery

I am so sorry to hear this but I am glad you reached out here. Please let us know what challenges you are facing or questions you might have for the forum group. Maybe you have already bounced around the website and forum. There is so much information and people want to help.

In the meantime, we will keep you in our thoughts. Please keep us up to date as you work through radiation.

Stay safe and keep the faith,
Nels
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