Calling all TNs
Comments
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ALLY!!!! YIPPEE!!!! Doing a happy dance for heartburn!!! I will take heartburn any day over the alternative!!!
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Ag23 I love hearing the long term survivor stories too. It keeps this newbie positive.
Slv58 I will ask about emu oil when I go for port films next Tuesday. I start rads next wed. I am participating in a clinical trial for a calorie reduction during rads. My ro heads the study and said that in patients where there was a 25% calorie reduction there were less toxic effects of rads and less skin breakdown. Plus it will help me develop healthier eating habits going forward. I truly never looked at portion size or calorie counts that much before bc. But when I couldn't eat on chemo I quickly learned what healthier foods made me feel better. I have lost all but 1 lb of my chemo weight (damn steroids) and am at my pre dx weight. Now onto the other lbs I need to lose.
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Shopgal2 so interesting about the calorie reduction because I was yelled at for losing weight during rads. How quickly things change...
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Slv58...Cocker...Ally...Mike...I think about you often. I am still battling the spinal stenosis and seriously thinking about having surgery. I need to meet with the neurologist to get his opinion. My pain doc has me on Lyrica which should help with the nerve pain in my thigh and leg. But I can deal with this...better than the other alternative.
Wish you ladies nothing but the best and continued good health as we all try to move beyond breast cancer
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Hi everyone-- I wanted to chime in on the lumps and bumps near post-surgical sites. I was skimming so I can't remember who was asking about them but wanted to say that those things can be crazy-making!!!! yes, yes, YES you should all follow up on everything new you feel. However, surgery and recon (hell-- lumpectomy or mastectomy!!) can and does result in scarring. As you heal and the scar "matures" it will feel different from time to time. The *outside* scar is just the tip of the iceberg. There are all sorts of layers of suture, mesh, implants, etc inside.... All of which gets its own opportunity to scar. I've had several over the years and each time I freak the hell out. :P However, further investigation always goes back to 1. scar tissue, 2. implant breaking through the alloderm, or 3. mild LE. I've had ultrasounds and MRIs many times (too numerous to count!!) to investigate *irregularities* on that side.... even had a bone scan to look at a rib that was palpable under the damn implant.
My advice-- feel free to freak out. Then, breathe deeply, get it investigated, and know that it is most likely an annoyance and not a recurrence.
Just my 2 cents.
Hope everyone is doing well. xxoo
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Ally my old feller and myself suffer with reflux but in a different way. He has a sliding hiatus hernia (proven by gastroscopy) and has pain in his chest and takes Omeprazole and I have heartburn and take Losec. Alan's causes bad pain whereas mine causes discomfort of burning in the throat. The one thing that does cause his pain is that when he starts eating, meat seems to be the culprit, so I always tell him to eat something else off his plate first and not to eat meat first as it can get stuck, not only that I'm sure he doesn't chew it enough before he swallows it. He's always in a hurry and doesn't wait for his food to cool a little before eating so it's always too hot to eat but he does it every time whereas I am a slow eater and I chew it very well. Also I take my Losec at least half hour, sometimes an hour, at the same time thereabouts every day before my meal and don't have any problems and he takes his when he gets the pain (duh) which does resolve in about 20 minutes. I can't eat spicy or very hot food whereas he eats it and relies on his Omeprazole to fix the problem which it does. Perhaps you could try taking your Zantax every day at the same time, at least ½ hour before dinner, taking small mouthfuls of your meal first and chewing it really well before swallowing. I never suffered with heartburn before chemo so lets blame that. Also coughing can cause reflux as the cough reflex forces food up into the oesophagus and therefore causes heartburn. Other than that you could have a condition called H.pylori which you can be tested for. It's not cancer and can be treated with triple therapy (three antacids). It's worth giving it a try but your right antacids wouldn't resolve the pain of cancer but it would resolve acid reflux. Hope this helps.
Curly I also was told not to lose weight before rads as it can cause the measurements for radiation to become different. Needless to say I was so nervous as I didn't know what to expect that I lost weight anyway. So I suppose some good came of it lol.
Shorfi. Happy New Year to you. Spinal stenosis is another thing my old feller has. He had so many falls in his younger life (was always tripping over something, we used to say he had two left feet. Plus he had a bad car accident) that he fractured some vertebrae which cause narrowing and squeezing of the spinal cord and nerves. So he knows what you are going through with weakness and pain in your legs.
Shari it gets very cold here in the winter but we only have snow on the mountains. Must be lovely to take a walk in it.
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Ally so glad to read your update! I have Barrett's Esophagus which is caused by endless reflux/heartburn over the years. That said, I now take 40mg of Omeprazole every morning. It's kind of expensive if purchased over the counter, but if your doc prescribes it it's covered by insurance. Since I've been taking it...I NEVER have reflux/heartburn...EVER.
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Al Happy so happy for the lil wife's good news.
Ally, so happy for your peace of mind.
Hello to all
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I'm all for blaming some reflux on chemo. I've had it for years but not as bad as I have had lately. I take omeperazole in the morning and at night and that does help but the thing that seems to be key for me is never eating within three hours of going to bed/lying down. If I do I will fall asleep and then a couple of hours later it's like someone just flung open a door and the acid comes up and I sit up in a panic! Scary, a person could aspirate that stuff I think! I supplement with gaviscon when I know it's going to be bad. I am looking forward to being done with chemo so that perhaps this aspect will improve...
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Question: where do you get emu oil? I won't be doing rads for a couple of months but I'd like to be prepared...
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Hi, I am new to this thread. In fact don't really post much at all, just read and leave really, getting support and information through others people's questions. I have a question now though for which I have no idea which thread to post on, so I hope you can help me here. I had surgery in early August, a fairly extensive lumpectomy for 1.5cm IDC and 2.5cm of DCIS. I then had to return for further excision of the DCIS area because it was found to have lobulized and they needed larger margins. So, overall a big hole. Over the past couple of months, while I was on chemo, I have developed what I thought was extensive internal scar tissue in the surgical hole and is separate to the scar tissue I can feel under the surgical skin scar. It is now visible, that is. if lying down or standing with my arm up it looks like an egg under my skin. My medical oncologist confirmed she thinks it is scar tissue, my radiation oncologist thinks it is lymphedema. This is my second trip through the realm of BC but, although I got scar tissue last time, it was nothing like this. I could always feel the scar tissue under my surgical scar and still can feel the hole left after the lumpectomy. My question is, has anyone else had scar tissue that protrudes like this, or lymphedema that is firm like scar tissue? If so, how did you treat it, or did it just go slowly away over time (if it went away)? The radiation oncologist said lumpy lymphedema is quite common even without any other sign of it. Massage seems to have no effect, but I may be doing it incorrectly. I start radiation next week.
Thanks for your thoughts.
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Kal52, I don't have any experience to share (I have had no surgery yet) but I have seen that there is an extensive lymphedema thread, or you can start your own thread (just choose the forum you think best fits, then it will show up in new active topics and maybe people (not just TNs) will have some advice for you. Good luck, I hope you can find some solutions. Maybe start a new thread here: https://community.breastcancer.org/forum/64
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kal52 glad you stopped by and feel free to stay on this supporting thread. To me, your problem sounds like a seroma. This is common and if it gets too uncomfortable it can be aspirated (drained). It is a pocket of clear fluid which can occur frequently after breast surgery. It would pay to contact your surgeon and see what he advises as soon as you can. Hope this resolves for you.
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Thanks Notdoneyet, I appreciate your advise. I have looked at the other threads but decided this one was not only very active but also very friendly, and there is a mixture of people with all types of experiences. If no-one can help me here, I will try another thread.
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Hi Cocker_Spaniel, I had a very large seroma and had it drained weekly until about the time my chemo started. Up to 200mls at a time. My surgeon told me this lump, although it was much, much smaller then, was not the seroma so I haven't considered it since but, of cause, it could be. I will be seeing him again in 2 weeks so I will ask him again if he thinks it is the remains of the seroma or another one maybe. Thanks for the suggestion it would explain why massage has no effect. I had a CT for my radiation set-up last week and asked if they could tell me what it was (scar or lymphedema) but no they couldn't as it wasn't a diagnostic CT. You would think they could tell the difference though wouldn't you?
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kal52, absolutely, this is a great thread! But if you don't get the answers you need you may want a wider "audience" is all I meant!
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Notdoneyet...FROM AN EMU!!!!
Sorry, it was just right there! Had to take the low hanging fruit!
But seriously, Swanson has it.
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Hardeharhar! Thanks for the link!!!
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Anyone know if can you buy emu oil in a store, like whole foods?
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Shopgal they have it at Vitamin Shoppe
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Thanks again everyone! I greatly appreciate your support!
AL and Cocker - thank you so much!!! When you both mentioned Omeprazole it jogged my memory...that was RX'ed to me during chemo. I don't remember why...maybe I was having heartburn at some point, although it was never like this. Went upstairs to my prescription stash and sure enough I have some. I took one this morning on top of the Zantac because I've been in such pain. Seems dinner triggers the attacks and I've been going to bed in misery. Hopefully the Omeprazole will help tonight. I'm going to call my onc next week if the pain continues and I'm sure she'll send me for the GI workup.
Shorfi - so sorry you're still dealing with the back issues. Sending you hugs.
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Ally if the pain starts during a meal I would take the Omeprazole one hour before dinner and start with the softer food on your plate and then the meat and watch out for spicy foods. Your doctor may order a gastroscopy to confirm gastritis or a small hiatus hernia both of which can be controlled with the Omeprazole. As you will know neither of these are cancer. Hopefully this will help you.
Mike if you have Barrett's Oesophagus you will need frequent monitoring (eg yearly or two yearly gastroscopies)regardless if you still have the heartburn or not. Do you have this follow up.
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I really liked thunder ridge emu oil- you can get it on amazon.
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Shopgal another thing that may help with your rads is I was recommended to use simple soap in the shower. It is perfume and colour free and is called simply that - simple soap. Apparently it doesn't react with radiation to the skin like some soaps do and I found it of benefit during my rads. I got it in the supermarket but you can get it from pharmacies.
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Thanks Ally and Cocker. Now I am taking Lyrica and scheduled to have an injection on the 18th....did I mention this already? Just scrolled back and I see that I did. I am following up with a consult with a neurologist...yes, I am that desperate. This is no way to live
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Cocker I do have it regularly monitored by my gastroenterologist. In fact, there is a CURE for it now! It's a radio frequency ablation, which is a simple outpatient procedure. BUT, insurance won't pay for it unless the cells in the affected area take another step toward being esophageal cancer! Ridiculous! Like Russian roulette!
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thanks cocker I'll look for simple soap.
For ladies that finished chemo did you have diarrhea for a few weeks after? I am 4 weeks pfc and have a bout of diarrhea every morning. Should I be worried and call my mo or is it my stomach and digestive system still trying to get back to normal. I usually had crushing constipation during chemo and now I can't stop going. I don't want to use Imodium yet because the issue isn't at that point yet.
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Thanks Cocker, I'll definitely try that! I've been taking it in the morning but since I don't have pain then it makes more sense to wait like you suggested.
AL - how infuriating. I will never understand why insurance companies would rather risk paying for cancer treatments versus PREVENTION. This hits a nerve and reminds me of when my prophylactic BSO/hysterectomy due to being BRCA+ was denied. I wrote a 4 page letter citing every study which way to Sunday, and a cost analysis of each scenario. Grr is all I can say! I'm glad your acid is under control and you're keeping an eye on it. I'm sure this will help you avoid any further progression!
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In a Chicago hospital, a gentleman had made several attempts to get into the men's restroom, but it had always been occupied. A nurse noticed his predicament.
S...ir, she said "You may use the ladies room if you promise not to touch any of the buttons on the wall."
He did what he needed to, and as he sat there he noticed the buttons he had promised not to touch.
Each button was identified by letters: WW, WA, PP, and a red one labeled ATR.
Who would know if he touched them?
He couldn't resist.. He pushed WW. warm water was sprayed gently upon his bottom.
What a nice feeling, he thought. Men restrooms don't have nice things like this.
Anticipating greater pleasure, he pushed the WA button. Warm air replaced the warm water, gently drying his underside.
When this stopped, he pushed the PP button. A large powder puff caressed his bottom adding a fragile scent
of spring flower to this unbelievable pleasure.. The ladies restroom was more than a restroom, it is tender loving pleasure.
When the powder puff completed its pleasure, he couldn't wait to push the ATR button which he knew would be supreme ecstasy.
Next thing he knew he opened his eyes, he was in a hospital bed, and a nurse was staring down at him.
"What happened?" he exclaimed. The last thing I remember was pushing the ATR button.
"The button ATR is an Automatic Tampon Remover. Your penis is under your pillow."
"MEN NEVER LISTEN"
Just a little something to help make you laugh.
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Cocker....I love it...lololol
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