TRIPLE POSITIVE GROUP

knmtwins

SOFT trials - I'm confused. Why do OS, why not just yank those puppies. I'm 49, but was still mensing ever 28 days to the hour, so although I'm currently in chemopause, I think I'm still pre-menopausal. I need to read up more on SOFT

Moonflwr912

i had them run a large bag of fluid with my TCH. I got diarrhea every time on days 5 through 10. I needed that fluid. On occasion I had to go in the Thursday after TX to get another bag. I'd actually forgotten about that! LOL

Much love to all

lago

knmtwins I was 49 at diagnosis. Perimenopausal but I too was every 28 days like clockwork. My cycle was a bit shorter than in my 20's though. My last cycle was 2 weeks before chemo. Given my family history (mom & sister 51/53) my MO and I both knew it wasn't coming back. I started on Anastrozole but was tested for 5 months. Switched to Exemestane after 3 years do to SE.

Blownaway

I have officially lost all my steroid/chemo weight as of this morning - I swear I think it's the Effexor that's helping me take it off....

PMR53

Formydaught

I get so dehydrated also. Will ask for fluids when I go in for #3 Neulasta shot. What did your MO say regarding remaining disease free with 4 VS 6 treatments? Did you tumor shrink by at least half? I hope you are feeling well. It looks like you just had another surgery!!

Blownaway: Congratulations on reaching goal weight!! good job!!

Patty

Mommato3

Blownaway, congrats on reaching your goal! I hope to be able to report the same in a few months.

Knmtwins, removing your ovaries can impact your heart and bones. Two of the three MOs I consulted didn't recommend removing them

knmtwins

Mommato3 - wouldn't pharmaceutical OS create the same issues that removing ovaries would?

SpecialK

knm - I think the idea is that suppression is a temporary thing, whereas ooph is final.

formydaughter

Glad I coild help raise dehydration awareness and tips from all.

Patty - I had BMX before chemo, so I have no idea how my tumor would have responded to chemo. My MO said that for me 4 sessions was enough. It had to be because he wouldn't give me any more for fear of killing me. So, I'm going with the idea that my BS saved my life and the chemo is just insurance. I still am getting in a yr of Herceptin. My MO also reminded me that I had originally advocated for 4 rounds of TH, given other trial results showing 3yr DFS at 98% with that protocol for Stage 1 and 2, tumors less than 3cm. I was right at 3cm, so the tunor board overruled my idea. So when chemo went to he&@ in a hand basket, he said, hey, you still got more than you asked for.

Knmtwins - per SOFT my MO is switching protocol for me. I'm on tamoxifen. But we plan to switch to an AI. In order to do it, since I came out of chemo pause, I'm now getting OS via Lupron shots. One step at a time. See if I can handle Lupron first. Then if I do, make the switch, Met with my OB today and if I tolerate the Lupron and decide to go this direction permanently, we would do Ooph surgery, so I don't have to keep getting the shors, He said both have the same SEs. Special K is right. Lupron is reversible. So, if the hot flashes and other SEs are too much, then we'll go back to premenopausal statusand take tamoxifen.

knmtwins

OK - now I get it. Try Lupron and AIs to see if it isn't too bad then do an ooph. I must say, now 2.5 months post chemo, my hot flashes are happening less frequently. Wonder what that means. My 11 daughter is going to start mensing soon, per her pediatrician, I wonder if that will start me.

CassieCat

knmtwins, my 15 y/o has been having periods throughout and that hasn't gotten mind going yet. I'm 8+weeks PFC with no sign of a period. I get warm flashes, mostly at night, and occasionally hot flashes that lead to night sweats. I'm nearly 44 and was getting very regular periods up until chemo. I'm curious to see what will happen.

PMR53

CassieCat

Did you start Rads today? I was looking at your last post and saw that date. Also I wanted to ask you, what do you notice with Herceptin only infusions?? Hope you are doing well!!

Patty

CassieCat

Hi Patty, Yes I did start rads today. It went well, thankfully! I posted an update on the winter rads thread. As for Herceptin alone, I've only had one of those so far but have my second tomorrow. The first time, they prepped me with tylenol (oral) and Benadryl (IV) and then ran the Herceptin for 60 minutes. It was completely uneventful. I had a mild sore throat that night, but no other SEs that I could attribute to the Herceptin (and that could have been unrelated, as I have now had a head cold for almost two weeks). At that time I was about 5.5 weeks about from my last chemo and about 2 weeks out from my MX. I'll see how it goes tomorrow - I do the infusion and then about an hour after it's done, I go for rads #2. Fun Friday, eh?

knmtwins

Patty - I have been Herceptin only since November 19, every 3 weeks, but my surgery was the day before my 2nd one, so I had 4 weeks that time. At first I didn't realize anything, as I was still suffering from post chemo, then post surgery. But now I realize, I have some constipation, which I no longer can blame on pain meds, joint stiffness, primarily hands, hips and knees, a 'loose' knee 7 - 14 days after, feels a bit like the outside ligament isn't holding it in place when I go to sit or do stairs, itching on the skin of my hands, and I still have some neuropothy in my hands and feet. My hot flashes have been reducing weekly. My MO isn't going to start tamoxifen until after Herceptin is done, although he offered it to me at my last apt, but said he was OK either way.

Cassie - yes fun Friday, here to kill cancer!!!! Cassie, before chemo, were you and your daughter on the same schedule? I know in college, my roommate and I would always 'regulate' to each other.

PMR53

CassieCat

Thanks for replying. I had Rads back in 2006. It was so easy compared to chemo. I do remember after 2 weeks it felt like a bad sunburn. I was given some kind of Creme by the radiation Oncoligist. I put that on 2x a day. Then at the end it just kind of burned. I was told to put a spray like solorcaine on it. It was the middle of summer and it was hot. The sunburn look fit right in. When that was over (29 x) I remember being tired for a couple weeks. My last visit with the Radiation Oncologist I got a certificate. Congrats your done!! I will never forget what he said. I asked him " Now what do I do"? He said " your done! Go live your life". And i did I never dwelled on it and then almost 9 years later a new kind popped up on right. I feel like it was caught early enough that chemo and MX will cure it. All I can do is pray and hope for the best!! Glad you are on on the downhill stretch!!!

Patty

CassieCat

My DD and I are usually close in the timing of our cycles, though not exactly together.

Patty, I guess that what we all fear, eh? I'm sorry this is round two for you, but you can beat it again!

PMR53

KMnTwins:

Thank you for the information on Herceptin only. It will be a similar exp for me also as I will be on same timeline. Hard to say which SE is left over from the chemo cocktail or caused by Herceptin only. As long as the nausea, taste changes and fatigue is not part of it. That would make one long year!! Have a great weekend All!

Patty

chrissie29

Ladies,

I still have some low lab values like my creatine and total protein which says can be indication of liver disease.  My last TCHP was end of November but I continue on Herceptin every 3 weeks with radiation.  Did your lab values take a while to come back to normal?

Chrissie

Moonflwr912

my 2 daughters and I cycled about the same too. Except my DD1's first mense. She pulled me right into my period 2 weeks early. Hormones are strong stuff! LOL

RobinLK

Chrissie my labs are still off. Liver panel is high, but decreasing. WBC fluctuates between 2.6 and 3.3. I finished chemo in May. Just finished herceptin last week. My MO says he is not concerned.

SpecialK

My labs took about six months to return to normal. I still have occasional low WBC but it doesn't seem to cause any problems.

CassieCat

My HGB is still a little below normal, but everything else has bounced back. My kidney and liver function remained good throughout chemo, however.

formydaughter

Happy Valentines Day! Wishing you chocolate, 2 dozen roses, Fifty Shades fun (lol), and most importantly, health, happiness and peace today

Mommato3

My labs were all back to normal at my last Herceptin treatment. They could have been the time before but I didn't request a copy of them. Happy Valentine's Day to all!!

chrissie29

Thanks for the responses regarding the labs.  It is reassuring knowing that it could take sometime.  I just thought they would all be normal by now.

Chrissie

Anonymous

Chrissie, what is that brand of 99 percent cocoa you like? I need it!

Through chemo and herceptin, there was always at least one thing wonky on my labs. My NP friend and her doctor husband would patiently review them with me and say no need to worry, just like my onc said, lol. I dont think liver was ever an issue, but creatine count was a little weird. Everything has been in the normal range the last few times.

I have my first interview with a new oncologist next week, since mine passed away and I was underwhelmed by the replacement. He has all kinds of great reports and recognition, but is older, which concerned me as I am thinking long term. But his office was so incredibly receptive and welcoming when I called I decided to give it a shot.

Pbrains guy hasn't called me back after two calls. Still working on him.

chrissie29

Fluffqueen-I like Lindt 99% Cocoa.  I have been inching up the dark line-first 70, then 85 and 90.  I think it is tasty, but my co-workers thought it was horrible.  The Lindt store person recommended not biting it but letting it melt in your mouth, but I just bite it.  It does keep me from eating more than I should.

 

Chrissie

knmtwins

What should I ask the MO - I see him tomorrow for another round of Herceptin tomorrow and I'm still aching from the last one. Anyone have ringing in their ears? I think that is what I should call it, it sounds like outside at night during the summer. My Herceptin is a 1 hour infusion, should I ask to have it increased to 90 min? Might that help. I'm currently getting something for nausea, benadryl and it. Someone said they were getting steroids with it, might that help? I'm just done with all these symptoms and all these bills!

SpecialK

knm - carboplatin can cause ringing in the ears - I still have it and I finished chemo in 2011.  I would ask if you can do the H in 90 minutes and see if it helps.

Mommato3

Knmtwins, It wouldn't hurt to get it over 90 mins. Then you'll know whether to keep doing it. Especially since you have about another five months to go. It's interesting that some of you get stuff prior to your infusion. I don't get anything. I've decided the stiffness is left over from chemo even though I didn't have a lot of this during chemo. It isn't any worse right after my infusion...and gradually gets better. So that's my story and I'm sticking to it.