Hi. I'm Andy. I was diagnosed on Valentines day with ARMS. A [...]
Hi. I'm Andy. I was diagnosed on Valentines day with ARMS. A tumor in my right maxillary sinus and several lymph nodes involved in my right neck. I've had a round of chemotherapy and surgery. I'm starting my second round of chemotherapy and radiation. I tolerated the chemotherapy very well. The surgery was a bit rough. Quite a few nerves cut and loss of feeling in my face and neck. I'm concerned about the side effects of the radiation. Anyone ever go through tomography and proton therapy? How did you cope with the side effects?
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HugInterested in more discussions like this? Go to the Head and Neck Cancers group.
Hi @andyc, thanks for your post. I am one of the moderators here. I have messaged the other members of the head and neck cancer group to see if they can share their experience.
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1 ReactionHi Andrew:
Sorry to hear about the diagnosis of cancer - but on the other hand you've been diagnosed and now have a treatment plan. Those are good things!
I had to look up the acronym - I assume you're talking about anaplastic rhabdomyosarcoma?
I was diagnosed with sphenoid sinus cancer and possible node involvement nearly 7 years ago. No surgery - tumor was in tough spot to reach - but treated with 2 rounds of chemo and 6 weeks (total of of 40 rounds) of radiation therapy. The side effects are rough but they can be dealt with. Just keep in mind that the recovery is slow at first in small increments. We're used to dealing with illnesses that pretty much resolve in a couple of weeks. Here we're talking months and that is also depending on your age, physical condition, and extent of treatment. The one biggest piece of advice I can provide is to adapt and stay flexible - sometimes you have to try more than one solution to a side effect issue. That's why patient communities are so valuable.
Radiation usually has the biggest side effects and also last the longest. At the top of the list I'd put fatigue and depending on the target area, dry mouth, swallowing issues. Nutrition and hydration will be vital to your recovery. Not know the treatment protocol for you - have they suggested a PEG tube for feedings? Your calorie requirements are going to increase so you have to get your nutrition in as best as you can - either via a PEG tube or liquid meals. Bottle water will also be important since that will not only keep you from dehydrating - something that I suffered with - but also help clear out the waste from treatment.
There will be several things to discuss along the way. Have you thought about a patient support group? SPOHNC (Support for People with Oral Head and Neck Cancer) is a national organization that has chapters all over the US and also has a matching program where they provide you with a survivor or caregiver to connect with that has had the same diagnosis and treatment protocol as you have. Look them up on the web - I don't know if I can post a web address here.
If you have specific questions, please ask. I'll do my best to answer them.
Remember - the recovery will take time. But many of us here and elsewhere have gone thru it and made it. I'm seven years out now and that period is now just a memory.
Good luck to you! Wishing you a successful treatment and quick recovery!
- Jeff
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1 ReactionHello Jeff,
Thank you so much for your reply. ARMS, or alveolar rhabdomyosarcoma, is specifically with which I was diagnosed. It is an aggressive cancer which usually afflicts children. I, however, am in my 50's. I'm have a mid-life crisis of another type. I am glad to hear that your cancer was treated successfully and you are doing well. My treatment plan started with 12 weeks of chemotherapy using 3 different drugs. Then the surgery to remove my right maxillary sinus and lymph nodes on my right neck. Only one lymph node tested positive for cancer. Now, I am in my first week of radiation/chemotherapy. I am scheduled for 20 sessions of tomotherapy and 8 booster sessions of proton therapy. Chemotherapy is scheduled to continue until the first week of November. That is the plan. No PEG, just a liquid diet when my throat gets sore and swallowing becomes difficult.
I appreciate your answers about recovery time. Your reply was very reassuring. I, obviously, have some anxiety about what lies ahead for me. I am going to do all the things the medicos tell me to aide in my recovery. But that only goes so far. Hearing from someone like you who has experienced it first hand makes me feel much better.
Thank you again for your insight.
Andy
Hi Andy:
Having read your reply, just thought I'd add a few suggestions for now -
You mention swallowing - that is an issue that directly affects your getting the proper nutrition which not only includes the types of food you eat but also the calorie count of what you consume. You'll find that radiation will amp up your metabolism so you'll have to at the very least keep your calorie count steady or increase it while keeping an eye on your weight.
Your job right now is to get thru treatment and get well. You need tools for any job and a food journal is a good one to have. You can do it via a written journal or you can use FitDay.com to enter what you're eating and when. It will sum up your total nutritional count including calories. Keep an eye on your daily weight - if you see it start to drop, increase the calorie count. No doubt you'll lose some weight but you want to keep it to a minimum. I lost 40 lbs (220 lbs down to 177 lbs) until I finally got it to stabilize. The weight loss is just another stress on the body and also slows down the recovery.
I also mentioned hydration earlier. Pick up some packs of bottled water and every day put at least 4 bottles out on the table. By day's end, you should have finished those bottles. This will give you both a visual cue and a visual goal as to what you need to do.
As far as any pain when swallowing - ask your oncologist for a prescription for "magic mouthwash". I put that in quotes since there is no real product with that name - it's a mix created by the pharmacist according to the doc's prescription that includes a numbing agent (ie lidocaine) and a coating agent (like Maalox) along with other possible helpful ingredients. This will sooth any mouth or throat pain. It's not long lasting but it will get you thru a meal or any bouts of discomfort.
Fatigue is a common side effect - the best remedy for that is sleep or naps. As the zen saying goes - eat when hungry, sleep when tired. Although your appetite will most likely be supressed by fatigue, set up a meal plan and times. Have someone help you with that if possible. If necessary, take naps and get some restful sleep when possibly and necessary.Sleep is a restorative - best of the natural medicines available!
Get out a walk if you can. There's a world outside so don't isolate yourself. Depression is a possibility - cancer is an emtional disease as well as a physical one. Don't cut yourself off. Exercise is one of the best ways to stay involved.
There will be other issues along the way so don't hestiate to ask. Sometimes the best advice is from someone who's walked the walk.
Stay determined, stay strong, stay optimistic. Treatment comes to an end and recovery will begin. Just keep moving forward...
- Jeff
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1 ReactionGreat tips, Jeff. Thanks again. I'll reach out when things get dicey.
Hi Andy, I Was diagnosed with neck and throat cancer in Nov, 2013. I had Chemo and radiation. 6 months of treatment packed in to 6 weeks. I handled the treatments better than the side effects.
The side effects , terrible dry mouth, terrible fatigue , could not eat. no memory and on and on. You received good advise from Andy. Good luck & be positive.
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1 ReactionI had radiation treatment after surgery and had the following problems: sore throat and lack of taste which leads to a poor diet. To get enough protein i consumed at least two milkshakes a day made with Muscle Milk, whole milk and frozen yogurt. Important to eat
or they will put a feeding tube in. Toward the end of treatment skin was like I had a severe sunburn. Dry mouth because the radiation hurts the salivary glands requires a drink of water with every bite. Fatigue after the third . I went from 180# to 155#. It was not too bad and after 5 years I am cancer free and about 90% of my taste has returned. Good luck Possum
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1 ReactionThank you for your time to give me some good insight and encouragement.
I appreciate your advice. Thank you.