TRIPLE POSITIVE GROUP

sharigal sorry late getting back to you, but been off the boards for awhile, had that cold/ cough issue going around for about 2 weeks a little better, the runny nose issue is common, also with chemo you loose your nose hairs so that's the reason for the runs, and bloody because of thinning in lining, do the Vaseline thing, and will be awhile with the nose hairs as long as herceptin is going on, it will be better. I am down in Atlantic city area, so yes we could meet if you want to, when you are good and up to it. We have a Gildas near us, and go to many of the functions. This July we will be hosting the dragon boat races for those who have had BC. Very big event on east coast. Last year it was in Vit.

Fighter girl, I chose double mastectomy with no recon my choice. If I choose to wear a bra with cups, I can be any size I want,usually for church or nice function. But it's really whatever anyone is comfortable, saw too many lopsided recons and didn't need the extra surgeries.

Stay well all

Hi Warrior women! If there is a New Jersey/PA get together, I'd love to try and make it... I'm in NJ, rural area SW of Rowan...Bluefrog, I'm not too far from you, depending on where you are in Cherry Hill...

Herceptin wipes me out. I feel like I got hit by a truck for 2-4 days after infusion. My infusion nurses have told me they've never heard of that kind of reaction before. I told them I'm not making this shit up!

Sorry...but to be told that your symptoms aren't from what they are pumping in you is like a slap in the face. I wish they would just admit it...it's not as benign as they think!

i also had a really hard time with my first herceptin only. I'm also having itching the first few days after herceptin. I have slowed the infusion down to 90 minutes and it has helped tremendously.

Hi all. My MO thinks most of my SE are due to the Perjeta. She has given me the option of taking it out and the mix. I've had 2 rounds so far. Does anyone have experience with this?

hi rleepac

My infusions were given in 30 minutes as well, l had severe pain a couple of times. I had so much pain in my legs on my second last treatment I could barely walk, the next day most of the pain was gone. I told my nurse and she said she never heard of of this. The herceptin also flared my lymphedema a couple of times, I have not had a problem since I finished treatment. I wish that i knew that longer infusion times would have helped

I was in an exercise study for cancer and was told by the physical therapist running the program, that they are finding more problems with herceptin as time goes on. My blood pressure was up and down all the time as well. My hair did not start to really grow until I finished treatment, I am enjoying my 3 inch locks now

rleepac, I get the same thing with Herceptin only, even with it slowed down... I feel like I've got full-on flu for 2-4 days... A friend, who is a nurse, says she wishes doctors would listen with regard to SEs. She says, "When a patient comes in a they are saying this is happening, or that is happening, chances are its something we (the medical people) have done to them....

Durhamgirl, I get thigh cramps the first day or two of every Herceptin infusion...

Of all the SE I've experienced, I'm finding the ones related to eating (sore mouth, diarrhea, taste changes, abdominal pain) to be the hardest. Last round I was able to eat a few things like milkshakes, apple juice, grape juice and ice cream that tasted "normal". This round I can hardly handle anything. I gag at the thought of having to take food with my medication. I am wondering if anyone has resorted to IV nutrients?

tThey had to cut my Herceptin off when my EF dropped to lower 40s.. I wish I could have finished. They had to cut my TCH as well. When i protested and asked if it would still work my MO said ( this was when I was in the hospital from kidney problems caused in part from chemo)

" You have to be ALIVE for any of this to work."

Yeah put it all in perspective. Take crap cause it helps, but don't take too much crap cause you could die. Pretty much said it all right there. LOL. BTW it's almost 4 years since I first started chemo.

Much love

There is always hope for better treatments in the future, not that Herceptin and Perjeta haven't been promising. Shortly after I was diagnosed, I noticed a company I was interested in applying to at the time has an antibody in development to treat HER2+ BC. It is in Phase 3 of clinical trials, typically the last step before FDA approval. I'm a biochemist at a pharmaceutical company. I perform testing on monoclonal antibodies for treatment of certain autoimmune diseases, respiratory ailments, and cancers to make sure they are safe for use commercially and in clinical trials. Herceptin and Perjeta are also monoclonal antibodies, so the methods used to test them are probably similar to the ones I use. Interesting how I am now on the side of testing antibodies and the side of receiving them as a patient.

mltdd - I am right there with you on the SEs related to eating being the worst. I feel like things wouldn't be half as bad if I didn't lose my appetite due to not being able to stand the taste of food. I always joke that I hope someone isn't trying to poison me, because I wouldn't be able to tell. My taste usually gets better once I reach the halfway point in between treatments, which I just passed. I haven't taken IV nutrients, but my MO mentioned trying Boost or Ensure. Even though drinking it would be involved, which is just as bad as eating sometimes, I was going to try using a straw. I've never tried either, so I am going to try them before my next treatment to get a feel for how they taste now when my taste is somewhat normal.

Babygurlwarren - It's good to hear that you are changing oncologists and joining a support group. Best of luck with your Herceptin treatments, and I hope you start to feel better soon.

For those who are having issues with issues with eating....taste, appetite, texture...I found watermelon was something that always went down easy. Must have eaten it most every day for the entire chemo regimen. And surprisingly I was not put off of it. Still love it. Like an old, dear friend.

I second the watermelon, and other melon too - I ate them all through chemo.  I also had frozen smoothies.  I also ate potatoes in any form, often with something salty added.  I could taste the salty part (cheese or bacon) and the blandness of the potato did not upset anything.

triple P - this gets better with time - there are a few of us who still post here that are five years out or longer - time helps.

TripleP - I know exactly how you feel and I am the same way. Our stats are similar as was diagnosis date. I think this is a normal phase we are going through but I still feel it will be back any time now.

I hope time will heal us both physically and mentally

For food during tx, just like Special said, i could eat white things. Potatoes. Mozzarella cheese. oatmeal. Or grits. For some reason it went in easier. And cold things went down ok too. Probably because cold things were not as intense. I couldn't do any fruits and most veg. My drink of choice was watered down cold ice tea. And I still drink iced tea. It's not so much that stuff tasted good, more that it didn't taste bad.

I had to come off H early. So I envy those who can finish it.

Much love.