Calling all TNs
Comments
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(((ANNIE))
SherylB I had the same problems...mostly due to the neulasta shot. Are you taking Claritin to help with that? Get Vicodin if you need it for the first bad day or two.
Minxie sorry bout the lice. My DH still won't believe me that I had them once when I was younger.
I'm finished with rads and all. Now just to have check ups. Waiting for my "tan" to fade still peeling a little. And I'm clearly hit with Insomnia today....boo. My daughter's 7 year bday is tomorrow, no wait TODAY. I'm going to be so tired. Oh, well. Hello Kitty day in our house.
Welcome to SweetPickle. Hang in there. We're all in this together.
becky
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Look at this beautiful wee poppet
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O Cocker, that is so cute! One of my work colleagues sent me a teddy bear from Good News Bears in CA. It is weird that I find it comforting, but I do.
I wish I could bring my dog with me to chemo. She just loves sitting in my lap. Min Pins are snugglers.0 -
Annie - so sweet!
Managed a day out Saturday. Shopping and lunch with two English friends. Spent the day in bed recovering.
Wishing everyone a good week ahead!0 -
OBXK...you sound like me. I can go to lunch with friends but then I pay for it. Really tires me out just talking and listening to them! But it does feel good to get out and forget about cancer for awhile.
Cocker...very cute.0 -
Hi all,
Just wanted to say that I felt well enough Saturday to go to Sea World. I did rent an electric scooter but we were there for 10 hours and I just couldn't do all that walking. It was so great, even though I have been numerous times it was the first time for my two nieces, 9 and 14 and the smiles, oohhs, awws etc were better than the shows. Today feel the tiredness but so worth it to just enjoy a day out with beautiful sunny skies in the low 70s. Sorry all of you going through Nemo and the aftermath. Florida does have it's benefits.
Hugs, Sheryl
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Hello. I beat myself once, I beat myself twice, when will I stop beating myself again? This is in reference to my decision to use birth control pills for the 2 years leading up to TNBC. I was 46 when I started, 48 when the lump appeared out of no where. Is there anyone out there with TN who was on the pill when cancer was found? Also, anyone have solid evidence on the subject? Hugs, Renae
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Renae - I feel like my mirena contributed to my cancer. My mirena perforated my uterus and was hanging out in my pelvis right next to my ovaries. 6 months after removing it...BAM. I suppose I will never know and maybe just looking for someone/thing to blame.
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Renae...I don't believe your birth control caused your TN as brith control pills are estrogen based and TN is not. I feel like my diet although it wasn't horrible, just inconsistent. I was told a few years ago that I was borderline insulin resistance and to give up sugar and bad carbs.....well, I never did. Then doing some researching, I read where insulin resistance is one of the causes of BC. And I was inconsistent on exercise as well.
Next week, I meet with a Nurse who goes over survivorship things with me. One of the things is a diet strictly for TN. So I am looking forward to hearing,what she has to say.
I don't think though we can blame anything we did or didn't do. I think it's just the makeup in our body and how our cells react.0 -
Hi ladies. I know that TN usually recurs in the first 3 years. Can someone tell me when you start the 3 years from? Would it be from, say, mastectomy date, when the tumor is removed? Or after chemo and radiation? Thanks!
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Mom...I'm going with Surgery date!
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Unfortunately there is no official time for when to start counting. This was a huge topic of conversation on a thread a while back. I think the most "popular" start time was that of diagnosis.
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I go with the date of my surgery which is 3-20-09...so I expect you ladies to be partying with me on that date!
Renea....please please don't think that the reason you have BC is because of something you did...don't guilt trip yourself that way...there are so many of us on here that live in cities, rural areas, smoke, drink, don't smoke, don't drink, some vegan, some carnivores, some took birth control, some didn't...no one knows...there just doesn't seem to be a common demoninator besides that fact that we are women...please don't beat yourself up over it...it was nothing that you did....ok????
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Renea-- Titan is so right. We have bc because we are women! I dont smoke or drink. I'm a buddhist and I have been meditating for a long time. Often vegan. Never use birth control pill. Actaully I'm a virgin
and I dont think that leads to bc 
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renae ((hugs)) i thought exactly the same as i was on the pill for years and even took it when i was supposed to have a period, to stop period!!
this was one of the first things that i thought, its my fault, stupid me not wanting a period and so on.
finally built up the courage to ask oncologist straight up, he very clearly stated the same as Hope, that it has nothing to do with the pill because im trip neg, it could only affect those that are hormone responsive.
so you like me renae can get rid of that idea....being on contraception had nothing to do with it.
xx
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theres lot of conflicting opinions to what date.
im going with diagnosis, just because it sounds better..(longer), there are many threads that will give reasons for choices.
so that makes me 10mths in..nearly a year...woop woop...no biggy!!! but feels enormous to me..
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Most of us tend to have surgery shortly after dx'ed generally within a few weeks to a month. So I am thinking either date would work given the short timeframe btwn dx'ed and surgery. HEY, pick what makes you feel comfortable and roll with it.
Renea- try to focus on doing what you need to do to get healthy whether it is chemo, radation, mediation, diet changes, yoga etc. The past is just that the past, and no one truly knows what the underlying causes really are. We have to just do the best we can.
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Hey all,
Just want to post something that is working for me. I have been diligent about brushing my teeth and rinsing my mouth with the baking soda/salt/water rinse about 4 x per day. Other than a bit of burning at times and crappy taste buds no sores. Well since chemo started I have had a sore in each nostril that has driven my nuts. I finally bought the NeilMed nasal rinse with baking soda/salt/purified water and it seemed to help but only came with two packets. The instructions said to either boil water or use purified water for refills. Well I boiled water and let it cool, added baking soda/ salt and have been irrigating my nose daily for two days. The sores are pretty much gone and my sinuses feel so much better.
Baking soda is safe to drink we have our dialysis pt. mix it in water when their blood bicarb is to low. We know salt is safe to ingest so the only caution is to not aspirate it into your lungs.
By all means check with your doctor before trying but it is what is in the sinus rinse pre-mix and so far I am ok.
Hugs, Sheryl
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Hi Sheryl, do you rinse even if your mouth is not sore? I only do the rinsing right after chemo when it starts to bother me. I have two more treatments to go. I believe you and I are on the same schedule. My #3 treatment is next Tuesday. #2 was much worse than #1. The Neulasta shot just kills me. The aches and pains are so bad I was in bed for 6 days last treatment. I do everything I am suppose to do. I see that some women on here get the 3mg shot, I am doing the 6mg. I have a call into my PA to see if maybe we can reduce it since my labs have been good.
Also I was wondering if the steroids have caused wt gain for you and the other women. I feel like I just keep gaining wt and I'm not even eating that much to do taste buds. Kinda depressed over it. But, it's ok I know I will be able to get the wt gain off when treatment is all over.
Hope your are feeling well. Have a great day. Anne
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Anne - I have gained weight as well. My 3rd treatment was the worse, I have 3 more to go....ugh. The Neulasta shots hurts my bones bad but I have started taking percocet it was the only thing that helped. I also use a heating pad those few days. Don't worry about the weight just get through treatment.
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JenJenl- Thank you for the response. Yes, definitley need stronger pain med for those days. I have a call into my doctor right now. Have a good day:) Anne
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Help! need advice, please. Anyone claustrophobic, about MRI? Last time i needed one , i tried valium, and still could not do it, (many years ago). I finished my chemo in Aug, '12, last rads was dec ('12). Have been plagued with headache, and MO has ordered a brain MRI this afternoon. Said to take Ativan, one now, and another just before MRI. Anyone had experience, as to how much Ativan worked, and how long it takes to be effective in body. I am anxiety ridden right now.
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luvbnggma(((hugs))) poor darling. surely they must have some meds to make it less anxious for you. xx
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Thanks, Liv. Took one Ativan--it is just starting to take effect. So I think I can take the other just before I walk in the door. Taking a sleep mask, and my own CD for comfort music. Don't know if u can use your iPhone music, or not. I really hate the testing part. My MO said she wasn't overly concerned, because she didnt see any other obfious symptoms, but we definitely need to check it out. I'm sure others can relate--I have already decided it's brain mets, and moved on in my head to "what kind of treatments are available for that, and how much is my life span shortened because of it" hate this stupid disease that takes our minds to places like that. Will post my experience after.
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Sorry for ranting on...I have been keeping up with posts on this thread, and wanted to jump in on the weight loss journey. I had lost some pounds during treatment, but now that my appetite is back, I crave (and, sadly, give in to) sweets. I have to stop. Planning a long needed girls weekend (this weekend) with my sisters and 84 yr old Mom in Branson, MO. We do it every year, and am hoping I have good news by Friday to share with them. When we get back, I am joining weight watchers, adding exercise, and hope to lose at least 15 pounds, depending on my PCP advice next week. Since my forced retirement, I have become a serious 'couch potato'.
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The husband leans over and asks his wife, "Do you remember the first time we had sex together over fifty years ago? We went behind the village tavern where you leaned against the back fence and I made love to you."
Yes, she says, "I remember it well."
OK, he says, "How about taking a stroll around there again and we can do it for old time's sake?"
"Oh Jim, you old devil, that sounds like a crazy, but good idea!"
A police officer sitting in the next booth heard their conversation and, having a chuckle to himself, he thinks to himself, I've got to see these two old-timers having sex against a fence. I'll just keep an eye on them so there's no trouble. So he follows them.
The elderly couple walks haltingly along, leaning on each other for support aided by walking sticks. Finally, they get to the back of the tavern and make their way to the fence The old lady lifts her skirt and the old man drops his trousers. As she leans against the fence, the old man moves in.. Then suddenly they erupt into the most furious sex that the policeman has ever seen. This goes on for about ten minutes while both are making loud noises and moaning and screaming. Finally, they both collapse, panting on the ground.
The policeman is amazed. He thinks he has learned something about life and old age that he didn't know.
After about half an hour of lying on the ground recovering, the old couple struggle to their feet and put their clothes back on. The policeman, is still watching and thinks to himself, this is truly amazing, I've got to ask them what their secret is.
So, as the couple passes, he says to them, "Excuse me, but that was something else. You must've had a fantastic sex life together. Is there some sort of secret to this?"
Shaking, the old man is barely able to reply,
"Fifty years ago that wasn't an electric fence."0 -
Hi Joyce,
As this is my 10th year since being dx'd with MS, and therefore having 10 year's worth of MRIs, I think I can help you with your MRI-anxiety.
I struggled through my very first one, because I also am very claustrophopic. One of the techs told me to ask for a washcloth or small towel to put over my eyes, next time. It works! I won't go in until I get my cloth. It really helps, because at some point you might open your eyes, and the cloth is enough to keep you from seing how close the surrounding tube is, but still lets in light, so you don't feel so encased. They might put a plastic cage over your head to prevent you from moving. Have the cloth over your eyes before they do this. The techs will put padding around your head for comfort.
The MRI room usually is very large with a high ceiling. Look up at that high ceiling before you cover your eyes, and keep that sight in mind. Yes, it's playing tricks with your mind, but hey...whatever works to fight the claustrophobia!
There is a small mirror in the tube, right above your eyes. Don't look at it! (Hence the cloth). I did during my first MRI, and I had to fight a panic attack feeling, after that. Of course, some people find it reassuring to look at their own eyes- looking back at them. I found it creepy!
Unless you chill easily, ask for the fan to be turned on. I think the air movement makes you feel less restricted, and easier to breathe. If you get cold easily, they can give you a warm blanket.
They will put a wedge under your knees to help your back. Make sure you are comfortable before you go in the tube. I have always found the techs to be very helpful and caring. I hope yours will be, too.
Music helps, but with brain MRIs, you usually can't wear headphones. I had one where they piped the music in without headphones, in between the times when they were talking to me. And that is another thing to remember...they are right there on the other end of the microphone, so if you are having problems, you can tell them. They will tell you how many minutes each section will take and ask how you are doing. They also give you a rubber bulb to squeeze, if you need them. I like to have soft jazz piped in - it's relaxing. Avoid the temptation to sing along with lyrics!
Remember to stay as quiet and still as you possibly can. Not only do you want good, clear pics, but you want out of there as soon as possible, with no re-dos! Luckily, brain MRIs only take about 20-30 mins. With MS, I am pulled out after one set of pics, and given an enhancing dye to "light up" any active MS lesions. I'm not sure if they will do that when looking for brain mets. You will know before the MRI, because you have to sign a consent form, and if you consent, will have an IV port put in your arm beforehand. Remember which arm NOT to use - looks like your right one, same as me.
Ativan should help take the edge off of your anxiety. I used Valium at first, but now I only use that washcloth! Don't make the mistake of taking too much...it can make you too drowsy and fuzzy-headed afterwards. Plus, you can fall asleep and wake up with a jerk, which really screws up the pics. I had a really bad MRI where that happened - it took forever for them to get clear pics, because I kept dosing off and jerking myself awake. Not good! Some people relax enough that they actually fall asleep! Lucky them!!! The techs don't encourage it, because they don't want any movement, if possible.
The MRI machines have improved so much over the course of my disease. The first time I went in, it sounded like they were throwing rocks at the machine - very loud! Now it has more of an electrical buzzing sound. It's still loud, but you get to wear those funky, spongey earplugs to cut the noise.
Once you're finished, you'll wonder why you made such a fuss...like all our tests, the anticipation is always the worst part. Hang in there...you can do it!
I hope some of these ideas will help you get through your MRI, today. If you have any questions, please feel free to ask or send me a PM. I'll be thinking about you today...and in about a month when I'm due for mine!
Take care ~ Shar
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Jenjenl-thanks for your caring response.
Shar--you r right. Anticipation was the worst of it. Had an Ativan at home, then another as i drove up to the center. I didnt look at the machine, walked in, turned around. Had them put on my own sleep mask, gave them my favorite CD to play, put in my earplugs, then headsets, and off we went. Got a nice warm blankie, and it was over before i knew it. Of course, they warned me that the brain mri's are pretty quick. Now, may need another relaxant, waiting for results. Hate this part, too. Of course, i am already plotting my course of treatment for cancer cells in my brain!:-)
Keep u posted
~Joyce0 -
Let's not go their Joyce - don't go there
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