TRIPLE POSITIVE GROUP

Linda that may be the tricky part. Sigh. Nothing is easy. I m lucky my cancer center and doc are in the s a me system. Getting the cardiac Dr's with my other docs i s difficult for me as its a different system. But it was emergency tx at the place I work so I was able to get it done. I could transfer docs and probably will have to at some point. 

Football nut, did you get meds for nausea? If you did take them right away and don't try to power through it. It's easier to prevent than stop once it's got a hold of you! The danger is dehydration. I ended up hospitalized with kidney failure from that. So if you can't drink enough call and see if you can go in for a bag of fluid. It's cheaper and easier than spending 4 days in the hospital because your kidney stops working. Same with D if that's the way you lean.  

Much love to all. 

linda I know when I still had my port but wasn't doing chemo I would still do the blood draw that my PCP requested through my port at the chemo center. 

Also I was a game designer too at one time. (Toys as well).

Linda, I LOVE the hat!  Thanks so much for the dedication ;-)  You are doing so much better than I did on TCH.  By day two I was sleep deprived from the steroids (stayed up until 4 a.m. watching Streaming Netflix). had vomited at least 3 times, couldn't even think of eating, smelled like a disgusting ball of toxic chemicals and had constant sweats  I drank and drank water and then threw it up.  One of my GFs posted on FB that she'd bring butternut squash soup over and I puked in my kitchen sink.  So you go girl!  You should definitely chew and chew and chew ice during the T and C transfusions.  I ended up on weekly taxol and chewed a huge cup of ice during the 1/2 hour that stuff ran.  I never had a mouth sore.

Nunci, I can very much relate to what you are saying about finishing.  I was counting off the weekly chemos, praying the spring would come, wishing I could feel like myself again, desperately wanting hair and to stop having uncontrolled poops, and then poof, I was done and I was horrified!  All I had left was herceptin.  They were cutting me loose.  You know, it takes awhile, but you do come to grips with it slowly.  I was back at the cancer center last month for my 3 month visit with my MO and while it was like a reunion, I was ok with not being in their care anymore.  It takes time so be patient and know you are very normal.

Even though it has been a month (tomorrow) since I had my port out, I think I've developed an infection, but maybe not.  I have a big lump along the incision, but it isn't hot to the touch.  I'm hoping it is just because my body is annoyed by the dissolving stitches that are hanging around...

Hi all,

Lago, I am sorry to hear about your issues. I hope you find a resolution.

Had my 6 month check up with the ONC. We had a long discussion about various options and whether it is time to switch over to an AI. I told him I wasnt really thrilled about the whole bone loss, joint pain part. I do have some aches in my hip and knees, a little arthritis in my shoulder and the rib pain is still there. I don't know if any of that is connected to tamoxifen, but I had none of it before I was diagnosed. He said he was comfortable keeping me on tamoxifen two more years, and then switching to an AI, even though I am definitely now post menopausal. He said I could also let him know if I want to switch at any time and he will set it up. He does Prolia injections. If I switch to an AI, I am considering going back to a low dose of Cymbalta to help with the joint pain and take the edge off.  I gave up Effexor for hot flashes a year ago, as it helped for a bit, but then stopped and I didn't want to increase the dosage.

My worst symptom on Tamoxifen is the hot flashes. Mine are worse during the day however, and they almost make me feel like I am having a panic attack. I can feel just before it starts and then as I heat up, I feel nauseous and my heart kind of pounds. I have to start fanning myself and kind of walk away if I can. Funny story...the stall of a public restroom can set off a hot flash. And then I get claustrophobic. My favorite Tamoxifen brand was Mylan but they quit making it. There was one that started with a t that I had real issues with and now I get the Watson brand. Better, but not as good. Not sure what the difference is but something.

Linda-get a tall skinny fan that oscillates and has a remote. Best thing ever, along with the Chillow pillow that you can buy at Walgreens. Buy two, so that when one warms up, you can toss it down and grab the other one. DH got the fan. It blows across the bed and cools me off. I keep the remote under my pillow. 

PBrain-had a long conversation with my gyn at my appt this week. I brought up Osphena and its relationship to tamoxifen. He was already on it. Said he had talked to the drug rep about whether breast cancer patients could use it. The rep said they kind of discovered by accident that there were the moisturizing benefits. While they don't think it would have an effect, they haven't done the studies yet. The GYN said it wouldn't surprise him that the next study would be to see if the Osphena could replace tamoxifen with the double benefit of blocking the estrogen while still providing the moisture perks.

SpecialK- so sorry your skin is still misbehaving.    My PS is almost militant about an alkaline diet post surgery - have you tried that?   (Although I'll admit it's confusing - every alkaline/ acidic food list you find is different - and I am almost sick of root vegetable soups and am so totally planning to have a giant steak with blue cheese and a big ol glass of red wine in a few weeks!).  

Also - have you asked about other options like hyperbaric chamber treatments?  (Will tricare cover those?) 

McK - I have not tried an alkaline diet - have been trying to ingest 100g of protein, taking zinc and large doses of Vitamin C and also drinking workout recovery drink to get the amino acids, and eating pineapple for the bromelain.  I honestly think it is too late.  The area of issue is not my incision - it is in the IMF and has been cut open seven times and always healed without incident.  This problem is on the face of  the breast between the nip and the cleavage - it is very thin and has been excised a total of five times - 3 times due to the necrosis from the original BMX in 2010, and these last two surgeries in the last couple of months.  The PS has cut back to healthy, bloody skin each time but it is not healing.  I am already scheduled for surgery on Friday the 9th to remove the implant.  It will be out for a few months, then a TE and expansion again, then hopefully a replacement implant.

SpecialK wish your healing would start already!

Thanks McK and lago - Yes, it stinks!  But I have done this before, so I know what to expect, it is just weird that it is happening now so far out from the original problems - it is a bit surreal.  Last time I was flat on one side I only had a partially filled TE on the right - now I have a DD implant, so I will need an actual prosthetic and mastectomy bra.  Ugh! 

linda - I would count this as day 3.  Don't try to type with your toes.  Weird and foggy is a good description, and this will probably not be a fun weekend, and maybe a few days into next week, but then you emerge and feel decent (hopefully) until the next one.  Hang in there!

lago - regarding video #2, after a couple of treatments we also have the hairdo!

SpecialK - the prosthesis was no fun, but I was glad I had it during rads when they had to drain my TE.   Go ahead and schedule your appointment with the shop (up here Nordstrom seems to be the only one) for a fitting as soon after surgery as you think your skin will be healed enough to do it - that way you won't have to wait.    I ended up getting the amoena one made for women with TE - so the front is formed , but the back has a pocket that you put poly-fill in so you can adjust how much bigger it makes you.  It worked well over my drained TE (which was creepy and bumpy).  ;/

I ended up with several extra bras because I had a hard time finding one that didn't bump my port.   I'd offer to send them to you, but I don't think they'd fit well over a DD. :-)

pbrain - thanks! I do remember the story about how the supposed "friends" took it upon themselves to clean, pat themselves on the back, and then gossip and trash talk about you to other co-workers while you were sick - and how upsetting that was.  And wow on this work frenemy at the hair salon. Just, wow! I cannot fathom how someone can have those thoughts, let alone verbalized them to someone who knows you! All I can say is karma is a bitch. What a miserable person - I suppose we should feel sorry for her, but I'm having a hard time with that.

McK - you are sweet! My old prosthetic has a flat back and it won't project enough but I may be able to use the soft cotton inserts from my old mastectomy camisole to augment. I will have to see. But I will definitely need a bra. I just used stretchy ones last time because the other side only had a TE with 200ccs of saline that I had to match.

Robin, can't speak to rads, but I didn't start tamoxifen until I was done with chemo.

Pbrain...that is not a frennimie. That is just plain enemy. And a seriously disturbed person. 

A few pages back was a discussion on meditation. I go to my ONCs yoga class twice a week. Kind of yogercize. Lots of breathing and meditation. Special K...here is my focus.  Me: ommmm, my foot is going to sleep. Ommmm....what should I make for dinner. Ommmm....my other foot is asleep. Lol. Ommmm...the person next to me is not chanting in a harmonious key.

It has gotten slightly better, but it takes very little to get me going on a mental to do list. I have gotten pretty good at the deep relaxation part, but I am laying down for that. Much easier.

And the post traumatic stress syndrome after chemo is over? Well, it is three years later and you can tell it is still on my mind. I beg the onc for every test that I can convince him to run to help reassure myself. Not that there is anything I can do to control if it is or isn't back. But I feel better being proactive.

Thanks for letting me vent guys.  I do struggle with a few of these nuts I work with.  They are troubled, but sometimes I wonder if it is me.

Fluff, you made me laugh out loud with your meditation!!!  That is ME!  Ohm, did I leave a wee wee pad down for the dog?  Ohm, oh crap, did I leave the flattening iron plugged in.  Ohm, I need to find someone to take that dead oriental maple down...ohm...oh forget it.

Robin, I started arimidex after radiation, but I think it is likely because of how the cancer centers work.  Once you are done with chemo, you are handed off to the RO and then, after that is done, you go back to the MO for your prescription.  I doubt taking it while you are doing radiation will be a problem and it sounds to me like your MO is on the ball.  BTW, rads were a breeze for me, went fast and were nothing like chemo, so try not to stress too much.

Moon, thanks for your sweet comments.  I wish you were one of my coworkers.  It is a jungle in there, idiot scientists with no social skills.

UGHHH PBRAIN - that is just a plain enemy - I do feel sorry for her in a way - must be hard to be that miserable.   You don't deserve to hear things like that either.   My BFF died from leukemia a couple of years ago.  She had a messy divorce about 5 years before she got leukemia and her Ex actually said she got it cause she was so mean.  Needless to say I have not and will never talk to him again.  I didn't even know what to say to their two girls when they told me that - I just hugged them and told them I loved them.  They never told me until after she had died and she had never told me either - but he had said it straight to her face UGH!  I think she knew if she told me that I might end up in jail on murder charges hence the secret LOL

Robin - I am so sorry that you will miss yours daughters graduation - it isn't fair that we get robbed of so much to fight this monster.  

SpecialK - I just can't imagine how you continue to keep such a positive attitude after everything - but I KNOW that you will be great one day - maybe a bra model.

I so appreciate all you advice and help - don't know what I would do without you all.  According to my calendar I am day 4 ish - although my chemo ended so late that day - maybe more like 3 1/2 LOL.  Anyway - I feel ok in the am again - weird but ok.  still tingly toes and fingers but not painful - that seems to build as the day goes on - I will definitely be talking to my MO about it.     Other that that and feeling weird - hard to describe weird - I feel ok EXCEPT so constipated - I have done everything - miralax, stool softner, fibercon, Milk of Mag pruin juice - ughhh - I have this issue in general otherwise - was hoping I would get a bit of the "D" as a SE to help - but no luck so far.  Any other great ideas??

Thanks

Yeah Karen!!  So happy everything turned out so great for you!