HERCEPTIN and/or PERJETA Threads
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Thanks ladies...I think I need to get back on my Nexium...I was taking it, ran out, thought .."hmm, I wonder if it really was making any difference.." ...and now I could smack myself up the side of the head...Hell Yeah it was working.....why do we do that..??....trying always to put less meds in the body I guess...thanks again for the sweet thoughts..Klynn.....
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Sue- yes, you're right, I'm essentially still on my "first line" treatment. The Cleopatra study looked at previously untreated patients with PHT followed by P&H, time to progression was 18 months. I don't think there's any data when using P&H after already having several types of treatment. You'd expect it to be not quite as good-but that doesn't mean it can't be the best thing ever for you!
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Sue--I'm the same as Carla. First line treatment...which increased progression free survival from 18-24 months to 56.6 months...or something like that. With such a huge improvement for first line, I have to believe that their is benefit for others in later stages of treatment. Hope it works for you!!
I've had such an amazing response with these drugs...I am thankful for more time, but I agree with others...cancer is not a blessing! The mental part is the hardest and grieving the loss of our previous life. I don't know if I'll ever adjust. And yes, stay on your pills!!! I was late getting my refills one time so was off for a week, I have never cried so much in my life! I guess that's how life would be without the antidepressants...which is understandable, but not a very practical way to try to function. I am sorry for all of you having a hard time right now. I am on the upswing from a 3 month depression. Sometimes we just have to go there. It's a very lonely place because not only do people not understand cancer, they don't understand depression either. My thoughts are with you lovely ladies. Just lean on each other. That's why we are here.
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Sorry to be a nerd, but that 56 month number was overall survival, not progression free survival. So Perjeta had a statistically significant improvement on both progression free survival and overall survival when given first line.
KJones-thanks so much for being honest and open with your experience with depression. It's something I think most of us grapple with and are reluctant to admit to, since the pressure to be brave and stalwart and the ideal patient is so strong.
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oops sorry. Got that wrong. A girl can dream though, right!
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so on average with herceptin and perjeta as first line, average is 5 years. My oncologist told me 5 Years is realistic, I sure am hoping for more after going thru this....
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Me too Banderso. It may be naive, but I have hope that there will be more drugs and new discoveries in those 5 years that will give us more time. I doubt I'll make it to 90 which was my original plan, but I do have hope of making it to 50 (9 more years). I just hope they are good years.
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I too am hoping that the time H/P gives us they'll find a magic bullet. I've been reading about how researches are trying to find a 3rd element to add to the two drugs to make a cocktail that's specific to the different types of HER2+ cancers. And I'm thinking the vaccines might be the ultimate answer. I wish I were working in a cancer research lab! --doing something productive at least.
Which reminds me, has anyone heard of trial that allow people to be on Herceptin AND Perjeta. I know there are some that allow people to be on Herceptin but last I looked they weren't allowing Perjeta.
I'm struggling with depression lately too. This may sound weird but I think it's post chemo and post chemo side effects (I really am feeling better and food now tastes reliably tasty), my scans are clear, tumor markers have plummeted to normal range, I'm tethered to cancer treatments, I don't know when this will rear it's ugly head again, I have a worrying pain in my side that doesn't want to go away but the Onc says is nothing, with the P/H regime I don't feel physically or mentally like I did pre-cancer, what now? depression. I'm not even enthusiastic about a week in Cancun next month--how depressed is that? A friend of a friend asked me what I've been doing since I moved to Maine and all I could say was Cancer, I've been doing cancer. Then my very well heeled friend squeaked, "she doesn't have to work, she lives with a surgeon." I wanted to throttle her. Actually, that's wrong. I left my teaching Feldenkrais Method out west and moved to Maine and right away lost my mom and was diagnosed with FUCKING METASTATIC CANCER. Thank Dog! my sweetheart had decided to go back to full time work and we moved and got the health insurance that goes along with it just months before this diagnoses. But life be damned I feel stuck a continent away from friends and family with this life sucking disease.
Ugh. Thank goodness I have my horses to take care of and dogs to take for a walk or ski everyday--what would I do without them to keep me moving and you all to share the journey with. I go for months without looking at these discussion boards (partly on the advice of my Onc) but here I am in the one community that has some understanding like no one else has. Thank you all for being here and sharing your stories, knowledge, feelings and fears.
love you all,
Miche
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Shutter...I was hoping for 90 too. My parents were very heavy smokers, but otherwise lived w/a healthy diet & oodles of exercise. Dad died at 66/Mom at 71. I figured all that & no smoking for me...long life ahead. Still thinking that on certain days!
I love bc.org because when I read what others have written, I feel I could have written the same on any given day, so thanks to everyone for honesty!
I can't get Cher's "If I could turn back time" (yes, I'm old!) or John Denver's "Some days are silver"..(maybe I made that one up)....out of my mind. What would/could I have done differently to not end up here...not a whole lot, I don't think.
I'm spreading the word...Seahawks on Sunday!
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Teakie & Marsha...thanks for scoop on what you're taking w/hp. With liver mets only, maybe bone meds not needed, just hope AI doesn't make me brittle. I broke my ankle & elbow while I was on femara 3 years ago...walking down a ramp! I wondered about my bones but surgeon said bones were strong...and I healed very well.
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I also had a nasty bout of depression about the time I started rebounding back from taxotere. Cried over everything. Revolving thoughts of what I won't be around for - retiring with my husband, grandchildren, helping my parents etc. I went to my GP to see if there was anything that could be done about the horrendous hot flashes and was prescribed the anti-depressant Effexor for them. I started on a low dose and it was gradually increased. In a month or so the hot flashes began to decrease and my mood was butter. I've been taking Effexor for a few months now and it seems to really help with both the hot flashes and my mood. Have a peaceful and pain free evening - Karen
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do you have to be stable to be on h and p alone?
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bhd1: What do you mean by "have to be stable?" Ann
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do you have to have stable scans to be on p and h alone
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bhd1: I finished my six rounds of Taxotere along with H & P, and then went on after that to just have H & P alone. My scans still show some liver and bone mets, but they all appear to be diminishing in size, so I guess I would consider that stable. There really wasn't any discussion between myself and my onc that I wouldn't be continuing on with H & P alone after chemo regardless unless the mets weren't going away. In which case I would probably have continued on with some additional chemo. Hope i was able to answer your question somewhat. Ann
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bhd1 - My scenario is the same as Ann's. I have bone mets. Karen
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thx ladies that's what I thought. I am on my last chemo . When that stops working my onc says I will just do h and p alone. Hopefully it can slow the depression down. Oi
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bhd1 & Ann: My MO took me off Taxotere after 6 saying I needed to consider my quality of life even though I still had signs of liver tumors on CT scan. I had steadily declining tumor markers. She said she thought since my response had been good the stuff that showed up on my liver was areas of dying and desiccated tumors : ) and sure enough, when I got a PET scan a month later there was no activity, but some scarring. A PET scan 6 months later showed even less. It was fabulous to be done with the nasty T!
And about Side Effects:
Does anyone else have scalp pain? I didn't loose my hair during chemo with Taxotere and H/P thanks to cold caps but during chemo last spring my scalp started hurting when touched. It hurt in a 4" diameter patch at the top. It still hurts when I touch my head or change the direction of my hair (like when I put in in a ponytail or clip).
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MicheTheVanquisher - I also have the scalp pain. Always on the top or near the top of my head. Feels like a bruise. The spots move around. I forgot about the scalp pain. - Karen
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I've never experienced any kind of scalp pain as you describe. Ann
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Miche- I had scalp soreness for about 2 weeks when I started losing my hair. I also have hypothyroid and every time they change my thyroid medicine I get a sore spot about the size of a quarter that feels like someone is pulling my hair. Some time the hair falls out in that small spot (that was before chemo).
Good news! The doc has has pronounced me stable and has dropped the Taxotere! I am "officially" joining you here on the H & P only thread! I may celebrate with a drink tonight
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Yeah for you to be off the Taxotere and Stable Mable! Always so heartening to get good news. H&P are nothing in comparison for most people. Yes, have a glass of wine or something. Dr Servan-Schreiber of the Anti Cancer lifestyle says a small glass of red wine is good.
Such good news!
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great news shutterbug
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Awesome Shutterbug! I also have hypothyroidism and take meds for it, but I have never experienced the soreness that you guys talk about. Ann
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Does anyone know anything about the vaccine trial at U of Washington or was anyone in the earlier part of this trial:
https://clinicaltrials.gov/show/NCT01922921
Vaccine Therapy and Trastuzumab With or Without Polysaccharide-K in Treating Patients With Stage IV HER2 Positive Breast Cancer.
Or has anyone been in any other vaccine trials?
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So happy for you shutterbug. Stable is great - Holding that booger off and beating it back! SUE
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That's awesome news Shutterbug! Definitely a reason to celebrate.
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Awesome news Shutterbug.....Stable is really the best we can hope for, and stable can last long stretches...I hope you get a very very long run with stable....I think it is just what our bodies need to be able to keep doing this...take it easy, don't push yourself too much, drag this stable time straight through the spring summer and fall...just think of all the actual plans you will be making....great news....!!!!! ...Klynn....
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Hi Ladies. I've been reading your posts and feel a little better that I can probably attribute my pains and side effects to P&H and I'm not just falling apart. I had 6 rounds of TP&H. They will only allow 6 rounds of taxotere. I had a 100% response. Which is great and I am happy about that. I will be on P&H until my HER2 mutates and the P&H no longer keep it at bay, or it effects my heart. Only 4% have heart issues so here's hoping I stay out of that.
I am very depressed, fight tears all the time. Thank you for sharing because now I can ask about something for that and possibly get rid of this horrible hot flashes. I just was rollin with it because I figured it's just part of it and my new life. HA, maybe I can kick that piece of this whole mess to the curb like we did the stupid tumors.
I know exactly what you mean, tethered to treatments forever. I've come to terms with that now but WOW, no 50 state tour in retirement for me,,,.crap, the 90 year old, 30 year retirement dream is definatly screwed. My Granny is 93. Why in the F am I even continuing 401K contributions?!?! I should just spend it like I got it...or something.
Whew, I have one helluva pity party going on....hopefully some meds like you guys talked about will help.
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shutter--woo hoo! No more tax! Stable is awesome! I hope it continues for a long time!
Tjg2--get those meds for hot flashes and depression. I promise you, the pity party will slowly go away. It may return, but you always have us to commiserate with
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