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Stories of Success and treatments or activities that worked
Hi everyone. As a newbie here who hasn't started radiation yet (starts next week) I found the information here to be terrific and it gave me lots of ideas. But one negative has been the very sad stories that so many of us are going through. To be honest it was daunting to read some of the stories of suffering through extreme difficulties. I absolutely understand that this is the place for that and the support that is offered is both important, relevant and an outlet for some of the frustrations that many are going through.
However, from the perspective of someone who is just starting out it was (to be honest) kind of scary, to the point where I almost dropped out because it was so depressing.
I'd like to propose that we have a thread that's kind of uplifting to provide encouragement to those of us who are new and specifically hear about success stories, encouraging results and products or services that seem to work well. This would be someplace where those just coming into chemoradiation or just coming out of it might find a place of hope.
Well, that's it. I'd appreciate hearing other thoughts And if it resonates let's keep it going.
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Don't forget to take care of your mental health/ emotional health as well. After my treatments were done, I joined an in person group of H/N cancer survivors that met once a week. I can’t state enough how much it helps to speak to people who have gone through similar things as you. Family and friends are really great but don’t have that intimate knowledge of experience. This group is a great starting place, but sometimes looking someone in the face, seeing their emotion and hearing their stories can be life changing and put everything in perspective.
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1 ReactionGood afternoon my fellow people. I finished my treatment last year October. Had my first scan and MRI in March this year and it was clear. My concern is my weight that is not coming back despite eating more and taking vitamins. Until today I am not yet back to my normal weight. I don’t know how I will add 5 kg more. My weight is not coming back. Who’s going through the same thing? What can I do to get my weight back?
@roblem
Thanks for this...and I love your spirit. Based on your experience I'm going to be hyper vigilant on the aspiration pneumonia problem. I'm sorry to see all you went through. Read all your attached articles and see that one of them is authored by a Dr. at my center. Easy one to get into the sessions with his collogues. Thanks especially for that. Be well.
@jmcfadzen I think the chemo drug you may be thinking of is docetaxel. My husband was told that since he has tinnitus, that this option was better for him and as it would have less effect on his hearing. After his tonsillectomy to remove the cancer and surgery to remove the tumor in his lymph node back in April, a few weeks later he received had 2 baby doses of the docetaxel along with radiation 2 times a day for 2 weeks. He is now a little over 2 months out from his last radiation treatment and his hearing seems to be fine and so far, he is cancer free. His experience with Mayo was also great.
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1 Reaction@linda90. Be patient, I'm just now back. Trach last July 15, radiation & chemo finished Oct. 31. Down 50 # by Thanksgiving. Slowly up but throat biopsy in January set me back, down another 20# by February. Up 40# now, about under 20 where I started & i feel good. I started walking/running in late April. It stimulated my appetite. I now run several times a week maxed at 7 miles!
@linda90 Hello and welcome to Connect. I wish I had good suggestions for you. I am 14 years past treatment and have had a few metastases during that time but currently clear for 4 years. I have not been able to regain the weight from pre-surgery. What has helped the most is exercise to build muscle, as I am now 72 and muscle atrophy is a real thing at this age. So stay active and do strength training with weights and elastic bands. I eat extra protein and extra small meals but it seems like my weight is stable. have you tried extra calories in nutrition shakes like Boost and Ensure or protein powder in a smoothie?
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2 ReactionsI am two years plus after having head and neck squamous cell carcinoma with 35 lymph nodes removed of which 4 were pos. I also had 30 rounds of radiation. I have some stiffness in my neck and some shoulder pain. Overall I did quite well and continue to improve. I have had 2 PET scans and 2 CT scans and all have been negative. I have only positive things to say about what I have gone through. Best wishes to everyone. I am 77 years old.
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3 ReactionsGood for you!! Nice to hear....I'm 77 too!
@linda90
My treatment ended in January, just now back to stable weight. I relied on High Calorie Boost, which I mixed 50-50 with coffee, decaf in the afternoon and evening. During the worst of the radiation I couldn’t eat anything, drank six Boosts a day. I have been tapering off as I added more and more food to my diet as my throat healed (I had tonsil cancer). Now down to one Boost a day with morning coffee and a supplement with higher protein (Premier) later in the day. I hope this helps, tough road we trod.
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2 Reactions@tbveblen
Set daily calorie goals based on weight you’re trying to achieve/maintain, then fill in with Boost to meet those goals.