Calling all TNs

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..

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

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. 

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.

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.

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."

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 

Let's not go their Joyce - don't go there

Yah Joyce!

Glad to hear it went so well. Hopefully your report will come back quickly, but being that it is already Wed, you may not hear until next week. Try not to let that bother you (Ha, yeah right!), because that is fairly routine.

Like jenjenl said, "don't go there". MRIs can show alot of things, and headaches can be caused by even more. The radiologists (probably specialised neuroradiologists) will look at everything, even your sinuses and optic nerves. You'll be amazed at what all goes on up there!

 And Joyce...please be kind to yourself. You just finished radiology in Dec. You are not even a year out from dx, yet. It takes time, girl. From your comments, it sounds like you are trying to find your "new normal", especially with "forced retirement". Oh yeah - I know all about that. I went through that 10 years ago. It is hard to accept, because the choice was taken away from you...but it does get better with time. It sounds like you are getting back into life with your plans. Go for it and have fun with "the girls". They will be your best medicine

Hoping for quick results~ Shar

obxk..Ihop your so funny....did you love the waffles and bacon

I have been having issues with my neck on the cancer side.  Pain when I tilt it back and turn a certain way so last week when It felt like something was pressing on my esophogas I decided it was time to go have it checked.  My mo saw me and did not feel any lumps but sent me for a ct and us right away.  I got the results today and I am happy to report that I have been diagnosed with hypochondria.   I could not be happier about this dx as the other options just did not sit well with me as you can imagine 

Maggie

Maggie - maybe a new pillow?



Hope - The waffle was divine! They also had really good coffee. I may have to look for my waffle maker, in the seldom used kitchen appliance cupboard. I like mine with fresh, NC pecans in the batter.

Joyce, find an open MRI even if you have to drive a bit. It will make it all worth it. If not take an Ativan at least 1 1/2 hours before scan to be at peak.

Good luck, Sheryl

Mags, awesome news!

Regarding weight, it is VERY common for women to gain some weight while undergoing treatment. My advice? Don't beat yourself up about it. My doc said, Eat what you fancy, and try to fancy healthier choices. And get out for a 30-minute walk whenever you feel up to it. 

Mouth issues, yes, don't wait until you have a problem. I rinsed with baking soda and water 4 times a day for 4-5 days after each chemo, thankfully any mouth irritations were very minor. 

Hugs to all those managing their way through chemo. It gets so much better! 

Shar - thanks for your kind words. I think I have found my solution for MRI anxiety--avoiding looking at the machine, blindfolding my eyes, and anxiety meds. :-) And my own music.

Maggie- good news. feeling your relief.

Sheryl - I asked about the open MRI. My MO didnt think the results are as reliable as the closed machines. so, went with her opinion.

I am finding it much harder to deal with the 'after treatment is over' aspects, than going thru treatment. I think I was running on adrenaline, since everything was 'pre-programmed' for me, I just did what I was told, and thinking we were beating the big C. Then, when my MO said they wanted to leave my port-a-cath in for at least a year..your mind goes to those unwanted places.  I am ordering the Dancing in LImbo book, hoping it will give me some insights to living with the 'after chemo' life.

Still waiting for results from MRI--I guess that's somewhat good news. MO said if there were serious concerns they would call her right after they read it (yesterday). Hoping to hear today, so I can have a peaceful weekend with Mom, and my 2 sisters.

Thanks, again, for all the support. It is so hard to try & express feelings to my dearest husband..who just says' don't talk about that'.  I know he worries too, but why do men, in general, hate to voice their feelings.  Sorry, for the ranting. Just feeling a need to vent today. Tho I dont post often, I read the posts often, and gain comfort and strength, knowing that what I am feeling it not so unusual. Moral support is sometimes half the battle to calming our fears, and getting us over the hurdles. Thanks.

~Joyce

Mumtobe - I am closer to your diagnsis (much older, tho :-), but am going with what my MO told me. After a year, our chance of recurrence goes down significantly. and, if we get to 2 years with no recurrence, in her words, she feels like we TNBC girls are highly unlikely to have a recurrence. I'd be curious to hear what others have been told. I know there are some long-term TNBC survivors out there.

On another note***GOOD NEWS***no sign of brain mets on my MRI. Some slight venous abnormality seen, but MO says it could be a lifelong thing, and just the way my brain developed. She wasnt concernced, but radiologist wants to F/U in 6 months to ensure it isn't changing.  I can deal with that. Now, off to pack my suitcase for a fun 3 day weekend with my 2 sisters, and Momma in Branson, MO. Braving the cold to shop may be too much for Mom, but we can have just as much fun staying in, visiting, and playing games. We seldom get time alone together, when one of us doesnt have to cook. :-)

Blessings to all of you!

~Joyce