Mskcc 30gy then 40gy
Anyone gone through the lower dose radiation at MSKCC? 30gy first over both sides of neck + 40gy to tumors. So the tumors still get 70gy, but the side effects on other side is greatly reduced as they say. Anyone gone through this along with chemo? If so, what’s the success rate?
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Hi wdidg,
Husband and I haven't started treatment yet (he has Stage I base of tongue tumor HPV+ 16). Local hospital told us 70 gy to tumor and 50 on each side of neck (left side has 2 lymph nodes and right has none). Rad Onc there was "somewhat vague" when I asked him how many greys, thus (and for many other reasons) we just went to Northwestern in Chicago on Tuesday. If he cannot get Proton (and so far they are booked until mid-October) he would get IMRT 70 at base of tongue tumor and 63 left side 2 lymph nodes and 56 right side non-involved lymph nodes. He was pretty specific. We are going back down to NW Proton Ctr in Warrenville, IL on Monday to meet both their Hem/Onc (Chemo) and their Director of Rad/Onc so we will learn a great deal more. However, we were told by NW on Tuesday that they had done a trial of only 60 in a de-escalation and had to end it as the results over doing 70 to primary tumors was not proven.
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I had proton at MSK where they did 30 gy from cheekbone to collarbone. They did additional to the lymph channels to around 50. They also did a total of 70 to the clinical area where the tumor was located. I was given cisplatin for chemo during the treatment.
I don’t know the current overall success rate, but do know the doctors are great at MSK. They also have been investigating much lower amounts of radiation for certain size/types off tumors. If you look at their website there was some other treatment that was much lower overall radiation (around 30),but I don’t have any personal experience with that. https://www.mskcc.org/news/low-dose-radiation-possible-game-changer-treating-hpv-positive-head-and-neck. Getting lower radiation would be a huge benefit.
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I finished treatment Dec 2020 for a t3n1m0 tumor. Thankfully clear scans/checkups since finishing treatment . I am generally doing fine. Some stiffness/fibrosis in neck. Swallowing seems good-supposedly docs can’t tell I was treated based on swallow tests, but it feels different to me. Have saliva/taste. Thyroid is ok so far.
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Was yours on one side of the neck or both? Six or seven weeks? Can you explain further on what feels off on swallowing? Did you use the magic mouthwash?
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My tumor was on a tonsil. I received 70 gy to the tumor so that was over 7 weeks/35 treatments. The way msk did my proton was they started off doing a first phase of radiation to general head and neck area then cone down/ focus on the areas where there is cancer. So I got “extra“ radiation to the tumor and the lymph channels/lymph nodes. I do have some visible signs of the extra radiation and don’t have hair growing on my neck where I received additional radiation to lymph channels (both sides neck) and the soft tissue inside of my mouth looks different (for example soft palette not uniform/different color and uvula shrunk). Regarding swallowing, the side receiving 70 gy feels a bit numb/stiff compared to other side. I eat normally for the most part, but keep water nearby in case something is really dry. I had some problems with coughing, but think that was more to do with post nasal drip and damaged throat sending signals to cough. My neck is a little stiff on the side with radiation, but nothing life altering for the time being.
Even though I picked proton for more targeted, it wasn’t a walk in the park. I had a hard time with chemo and wasn’t able to complete all the cisplatin because blood panels were not looking good. I also wasn’t eating a lot and dropped a bunch of weight during recovery. I was moving around and all, but was physically weak probably from losing muscle from not eating and it took me about a year to feel better.
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Thank you quiet.
Your story reveals that even though your path was different and you had proton therapy it was still not a walk in the park and your cancer journey left you with some leftovers although thankfully they are minor. It is interesting how they are able to give radiation with proton therapy with an overall coverage of the area to start with and then a narrowing and focusing then on the area of more risk with a greater concentration of the beam. And as usual, some people and their bodies tolerate chemo more than others. I remember getting ready for cancer treatment and went in to get my mask made and was talking to a lady in the waiting room and she told me every time she had gotten chemotherapy she was sick and practically bedridden for a couple of days. In your case, it was a blood count issue. I had the 3 chemos and 35 treatments of IMRT radiation and my situation was similar to yours as such that it was a year till I could say I felt right, felt recovered. How long ago was it that you had gotten treatment?
Wishing You The Best
Take Care, May God Bless & Watch Over You
Russ
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