Calling all TNs

KS- sorry I overlooked your great news on my last post! Congrats! I hope you have many, many many more years of NED!!

Totally sucks Luv! So sorry..... HUGE Hugs!!



Has anyone experienced their tongue turing Blue on the edges, discolored underneath and pale gums? My WBC's were alert low this week but the MO didn't want to give me antibiotics unless I had a fever, which I do not. I noticed the color change this morning, 9 days after my last treatment. Any input would be greatly appreciated......

I'm happy for KS and crying for Luv. I can't think of anything else to say right now.

Thanks so much, everyone!  I'm really OK right now, I feel perfectly fine.  We went to my DD's tonight, had chinese food, and sang and danced with the grandkids.  Nothing like grandkids to make you forget your troubles.

I am type 2 diabetic and my Boston Dana Farber oncologist wants me off my metformin.  You all know I've always been glad i was on it because of all the breast cancer clinical trials with metformin.  But it doesn't seem to be doing anything for me, and being on it excludes me from a few other, probably more important clinical trials.  So I'll wean myself off over the next couple of weeks.  I'll have to watch my diet and test my glucose levels more frequently, but I think I can meet their requirements for controlling by diet. 

Inmate can attest to the fact that there is a whole laundry list of chemos to try.  Add that to the clinical trials and there is plenty of opportunity to find the right one.  It's gonna be a marathon, and I've only just begun. 

I read all the posts, just haven't been posting. Better days to all  ~hugs~ WOW, some strong woman here!

A guy approaches the window of the movie theater with a chicken under his arm, and asks for 2 tickets. The girl at the counter wants to know who is going in with him. He replies, "Well, my pet chicken, of course!" The girl tells him that he CAN'T take a chicken into the theater, so he goes around the corner, stuffs the chicken into his trousers, and returns. He buys his ticket and goes in. Inside the theater, the chicken starts to get hot and begins to squirm, so the man unzips his fly so the chicken can stick its head out - get some air and watch the movie. Sitting next to him is Agnes. She elbows Myrtle and whispers, "Myrtle, this man over here has just unzipped his pants!" Myrtle whispers back, "Oh, don't worry about it.....you've seen one, you've seen them all." Agnes says, "I KNOW......but this one's eating my POPCORN!"

I had my 3rd dose dense AC on Tuesday. I asked my oncologist for something to help me sleep the first night, as the steroids had me awake all night, and the first 2 treatments also gave me a 24 hour migraine. He told me he is not allowed to prescribe anything due to the drug laws in this country, aaaaargh. Never mind the sleeping pill, I would eat your face for some codeine right about now. Codeine, however, is not legal and never prescribed here. Sigh.

Administering many drugs and particularly narcotics is a HUGE deal here. A regular pharmacist cannot dispense it (a special doctor who wears gloves handles it) and there are government applications and approvals and hoops to jump through. I had the same problem after my surgery. My anaesthesia wore off and I spent the whole night crying and begging the nurses for drugs. The first thing they gave me was over-the-counter headache medicine in my IV. Hellooo!! You just scooped out a body part and I don't think headache medicine is gonna cut it!!! She told me I had to wait at least 2 hours and then could try something slightly stronger. So it went all night long... My BS came in at 6am and was not happy to hear I had been left in pain. She called the nurse in and ordered narcotics, oh bliss. But once it wore off, I faced the same challenge with the nurses- terrified to give me narcotics without the surgeon present and so they refused. 

I feel very lucky to have found an amazing surgeon and a good oncologist too, but the drug laws here suck so badly. It makes me angry! 

Hugs to everyone. I read through the posts, but my brain is so scrambled today I can't keep everyone's challenges straight in my head, sorry. Wishing everyone an extra little bit of peace and happiness in their lives today. xo

Good morning, ladies, so much to catch up on in just a day!

Luv: My heart sank to hear news of your progression, but you're absolutely right - there are loads of drugs to try, and I hope the next one blasts those mets to smithereens. In the meantime, enjoy the grandkids.

ks: So happy for you - you sound like you have a great doc. 

Jan: I had a bone scan when first diagnosed, along with abdominal ultrasound and chext Xray, to check for signs of any further disease. I had another bone scan last fall when I had persistent aching in my back, to rule out mets. 

Sugar: Sorry to hear about the abscess - those can be nasty and painful. Hope you're on the mend now.

Monisch: Since chemo I noticed a worsening in my tendency to get dizzy (near black-out) when standing up suddenly. My doc put it down to my low blood pressure (always had), it's sometimes worse when I'm dehydrated. I just get up more slowly and all's good. That said, this is not a new condition for me. Have you talked to your onc about your dizziness? My deal with mine is that I call her with any symptoms that are new, unexplained, alarming and/or persistent... for peace of mind if nothing else.  

We're getting loads of rain lately - a good thing as everything has been so dry. So I'm cocooning with a good book for the weekend.  Hugs to all.  

Just want to say hi to all you strong ladies out there.

Sending peaceful calming thoughts to you all that need them - which I think is most of us

Luah and Kathyrn  Thanks for your info on bone scans.  That gives me some peace knowing my bones have been looked at.

Still feeling so sad for our lost sisters, for our sisters learning new troubles, for Cocker and her daughter, for momtobe.  Trying not to curl up and pull blanket over my head.  Well, it's too hot for that.  One foot in front of other.  I need to get a life.  Living in the mountains limits my everyday encounters with people.  Poor DH.

Jan

Ladies - Got an answer on the Blue Tongue.... Infection. No Fever, just a Blue Tongue and sore throat. Just wanted to share, might help someone some day?.



Wishing you all a peaceful night.

Bernie-Too funny!

KS-Congrats!

Luv-So sorry about the progression. Glad you have family and fun to help keep your mind off of it. Hoping the next round kicks a$$.

Inmate-I know what you mean about the tattoos! I did the same thing to 2 of my friends, we went to get tattoos and I chickened out! Couldn't decide what to get or where to put it. Great picture!

Jan-I don't know why my doc did both the pet/ct and bone scan, but I do know he likes to scan a lot! I think i have had just about every type of scan. Unfortunately now my insurance seems to think I am fine and has denied bone scan and pet scan, and ct scan. But, thanks to the persistence of my doc's office, the insurance finally said I can do a ct scan anytime, after saying they would not pay. It seems like it depends on who you talk to!

I am also so sad about Becky. Thinking of LJ, Suze, MBJ, Jenn, Blondelawyer and Becky makes me so sad and angry. Sometimes I feel so down and hopeless. I was originally diagnosed at a later stage then all of these gals. I am terrified of scans and sometimes think what is the use? Most of these gals were being watched very closely, and like many docs believe, it does not seem to make a difference if you find mets early or not, as either the treatment is going to work or it is not. So sorry to be such a downer lately. I think it is because it is time for my scans, and now the waiting has been prolonged because of insurance issues, so then I think I will just skip the ct that they will approve. Well, I better go do some yard work...

The difference in scan preferences depending on the MO is beyond my understanding. It is strange that two women can have the same diagnosis with two different MOs and the treatment/monitoring is COMPLETELY different! I'm doing everything I can to convince my MO to do a CT/PET to settle my mind about some issues and others get more scans than they do breaths in a day. It is so bizarre!



Have a fabulous weekend everyone! Let's enjoy every second as much as possible in memory of our sisters lost. God bless...

Day #11 of chemo. It was a great day. Peace to you all. My next milestone is hairloss.