HERCEPTIN and/or PERJETA Threads
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Hi all,
I am new to this scene, and as much as I hate to be a part of this particular club, I sure love all the camaraderie and support! I have been getting treatment once every three weeks since February - Herceptin, Perjeta, and Docetaxel. I'm very affected by diarrhea, and the runny nose and one runny eye! Weird. Other than that, I'm doing pretty well. I continue to work part-time/casual and am feeling pretty positive about how things are going.
Jackie
“Peace. It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart.” – unknown
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Welcome Jacapal:
Know that you're among friends here. This is a great place for information and support. Ann
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Thank you for the welcome, Ann.
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Hello Jackie, and welcome. SUE
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Welcome Jackie. Glad to hear you are doing well on the combo.
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Jackie...welcome sister!! Wishing you good results on your combo & looking forward to the end of Doce & living well on p/h (even with a drippy nose!). I love your description of peace...may our hearts listen to calm :-).
Sue...tell me you're healing...or I have to make a run for more Rocky Road...wink!
Have a great weekend, love bugs!
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Doing just fine Ronnie. Antibiotics did their thing - feel good and went out to dinner last evening. But you had better have a bit more Rocky Road just in case... SUE
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Hubby called my Mo's office and my chemo has arrived . I am "all set" for my session tomorrow according to the receptionist.
I hope you all do not mind if I use this thread as my chemo thread since I am getting herceptin and (I think perjeta..forgot to ask today lol ) and taxotere.
Not comfortable using the June Chemo thread since I see no stage IV folks in there. Is it ok to use this thread or is there another thread i should be using?
Happy to see you are feeling better Sue!
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Freygea:
Feel free to use this thread at any time. That's what it is here for. Good luck! Ann
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Hi H&P friends-wondering if anyone has had big weight loss with Perjeta? Starting in Feb lost 11 lbs, had a good scan in March, but continue to lose and now I'm down 28 lbs. I've gotten really tired in the last month. My onc is stopping the Perjeta to see if that helps. This didn't start until I'd been on it 4 months. Anyone else have this kind of experience
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Carla- I lost a few when I started H&P with Taxotere, but I think that was mainly because of damage to my esophagus from radiation which made eating unpleasant. With the steroids, Tamoxifen and stress eating I've gained it all back (and then some). Are you eating less or not keeping food down, or do you think something else is going on?
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My appetite is bad, plus if I try to just eat more I feel uncomfortablely full. My blood work is good. My TM is at the top of the normal range, which is about 13 points above the lowest it's been.
Interesting how having your dream of eating what you want and not gaining weight come true isn't actually that wonderful!
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One thing that helped me was drinking Ensure Plus (the ones with extra calories). Some people like them and some don't. I thought the chocolate ones were pretty good when cold, and at least I knew I was getting some vitamins and minerals along with the calories
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Wow, Carla, 28 lbs since Feb is a lot. I lost while on navel/h/p, but that's because a) I watched every bite so my liver didn't have to work too hard, and b) there's less absorption w/chemo..so loss isn't uncommon. It seems many of us, like Shutterbug says, have seen a bit (16 for me...ugh) more gain than loss on h/p. you haven't said you have D, which can be a se, and could cause weightloss. Sorry you're dealing with this...anything out of the ordinary (that sounds silly as nothing in this journey is ordinary), is concerning. Since we're on biologics, I think it's natural to think we should do very well...MUCH better than when on chemo, and for the most part, I think we can say that. But it's still medicine that's affecting our system...so I'm glad your onc is monitoring closely. I seem to be experiencing more fatigue...but maybe from feeling more normal so overdoing. I'm sure you've had or will be having your echo soon. Wishing you healing...
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Exceptionally good scan results! Dear friends, in keeping with the idea that good news for one of us is good news for all of us, I want to report that my scan results (received Friday) are amazingly good. I am actually overwhelmed. To borrow from the email that I sent to my loved ones: nothing in my brain (haha), nothing in my liver, and my lung mets have shrunk to practically nothing, this after beginning with literally a constellation of mets throughout the lungs over 4 years ago. The doctor says that the few remaining mets could be called "inactive". (Just like you, Ronnie my girl! We are on a roll!). Some of us old-timers didn't qualify for H/P and taxol, so our docs substituted navelbine for the T and it seems to be working. As soon as we recover from the shock, Dr. Opp and I are going to go dancing, or singing in the street, or something
On another note, the terror leading up to these scans was the worst I have experienced yet. Since we dropped the navelbine in January and I also have recently had pneumonia, I was Certain! that these would be bad results. I am determined to learn how to endure the terror that we all know so very well. Meds don't help too much, keeping busy - sorta, reaching out: not at all. The only thing left is to investigate meditation/yoga. Not really my thing, but I want to figure this piece out.
Meanwhile, love to all, peace and good karma to everyone who is waiting. SUE
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Sue:
I am absolutely thrilled for your excellent scan results! I too had a CT scan yesterday (Friday morning), and I was determined that I was not going to wait until Monday to find out the results. I called my onc's office, and "my girl" checked to see if they had been sent, and they had. Good news for me as well, so that's at least two for two of us. Let's keep the good news coming for all of us! Ann
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Congrats Sue! Wonderful news and I hope you get a long scan break now.
RonnieKay/Shutterbug-I have some big D from Perjeta but only for a few days each cycle. I am going to try to find a good protein drink to use. My 15 yo has this gigantic jar of protein powder he's using to gain weight for football, so maybe I'll sneak some of that! Yuck!
July is going to be a big eating and drinking month-going camping next weekend and then a bucket list trip to see my best friend in England, so lots of Cadbury chocolate bars and pints at the pub. If that and 2 months off Perjeta don't cure me, then I guess it will be scan time in August :
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LOTS TO CELEBRATE!!! Let's keep it going! I too had good results on Wednesday.
Thinking of you too Carla. I have a terrible appetite and get the third degree from my onc every visit. I am the opposite of you...I gain weight.
Love and peace to you all. ~ Karen
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Teakie and Karen-Hooray for you two as well! Have a great weekend celebrating good news
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I am so happy for you Sue!
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Oh wow! Look at all the good news to celebrate! Congrats on the excellent results Sue, Ann, and Karen! You are so right Sue. Good news for one is good news for all!
Sue - there are several free meditation apps out there, and the 4Her app by Genentech has a meditation portion. I've been meditating with someone one on one who is a 5-year stage IV colon cancer survivor, so she understands the fear. Perhaps you might be able to find someone near you who works with cancer patients?
Freygea - I hope you are doing well with your treatment.
While we are sharing good news, I walked in The Color Run today with some friends. We had a great time despite pouring rain. I felt great afterwards. For the most part I forgot I have cancer! Those moments are the best! Here I am at the finish line.
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I have been on H & P every three weeks since my chemo was done 03/31/2015. I was scheduled for an infusion this past Tuesday, however my mother passed away at 2:30 am on Monday. Called my Onc office and told them I had to cancel my apt. on Tuesday as I had to go with my stepfather and sisters to the funeral home to make arrangements and to the cemetery to pick out a plot. I told them I could have it rescheduled for next week and to call me with the rescheduled date. I did not receive a call. I do recall my Onc said at my last infusion that I could skip an infusion if needed as the antibodies stay in the body longer than chemo does so it would be ok. I am scheduled for a masectomy on July 7. So maybe later in July that I get next H & P infusion. I am NED from PET and full body bone scan done in April. Any one hear if it's ok to skip an infusion of H & P? This past week was very hard, can't sleep without Ativan and emotionally drained and spent. My Mom was buried yesterday.
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Truth be told...tears are running down my face. Sue...my kindred spirit...(your term of endearment from my DH)...my heart is flip-flopping! I thought your scans were in July...thank goodness I got thru them w/out knowing it :-) I just can't tell you how happy I am..but you already know.
Teakie & Mikarae...I'm celebrating your great news with tears...I'm a mess...eyes & nose running!!!! This is such fabulous news & I'm going to go swimming w/the grandsons now & we'll do cannon balls for each one of you!!!!
Carla...hope you bulk up in all the right places :-). D will zap your strength...get some good probiotics w/your pints & choc...happy you have awesome plans!
Woohoo Shutterbug...you go Girl!!! Whenever I need a smile, you're there!!! Glad you had a colorful run :-). Normal feels good!!! Love you all...it's a Happy Saturday for sure!!!!
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Great picture Shutterbug. You look happy.
Going to go lay down. Have a good night everyone.
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Dear Ladies of the Club: I posted, and then lost the thing. Here it is again: Ann & Karen, am dancing right along with you. So, so happy for your good results. SBug, you are amazing as always. You are indeed our spirit of joy and courage!
jcfree, I am truly sorry for the loss of your mother. Clearly you loved her very much. I have had to skip my infusions a couple of times (mostly due to infections) and my doctor has not been worried at all. My suspicion is that these drugs are probably cumulative, at least for some period of time. Ask your doc of course, but I would do what has to be done, and then resume. I suspect that from the infusion point of view you will be fine. This must be so very hard. I will keep you in my heart.
Carla, I have gained weight on H/P, but lost significantly when I was on chemo. I know that we need to make our bodies strong in order to fight. I had some good luck adding on the calories by drinking chilled chocolate Boost or Ensure. In fact, sometimes I froze it like ice cream. And absolutely anything that I liked to eat, I gave to myself whenever I liked, especially good chocolates. Good luck.
Hi Hydranne, good to see you.
And finally Ronnie! Indeed my kindred spirit, my west coast sister. Thank you for caring as I know you do and for the good karma that I know you sent. Lets keep dancing.
And so ladies: onward and upward! Fondly, SUE
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Just checking in and found several things to respond to.
I went on THP in February after first PET scan showed small mets irib and 2 small mets to liver.
Repeat PET scan in April showed NED.
Developed neuropathy to hands and feet after 4th dose of Taxotere. MO reduced dose by 10% for 5th dose. Neuropathy progressed and we dropped the 6th dose. It's been 7 weeks since last dose of Taxotere and neuropathy is still present but gradually improving.
As far as SE goes, every cycle has been different. My first cycle, I think I had everything - dry mouth. nausea,diarrhea, joint pain ,mouth sores, nose sores, and sores around my rectum, fatigue, weakness. Next three cycles were better, but the fatigue was lasting longer. I never really had problems with nausea and the diarrhea stopped
Always had mouth sores, but they gave me Rocky mountain mouthwash, which prevented a lot of problems
Around day 14, I would get "Taxotears", where my eyes would water and my nose would run. My vision was bad and I could not read the computer screen at work
With the dose reduction with the 5th dose, all of the SEs stopped. Except the neuropathy.
I've now had two cycles of H&P only and what a difference completing the Taxotere makes! I've had no SEs at all! No nausea, no diarrhea, no runny nose. No fatigue either.
Someone asked about weight loss weight gain. After my first cycle, I dropped 6#, My weight has been stable ever since. I have periods where my appetite has been down and things don't taste right (usually the first week after an infusion), but I would compensate by getting a milkshake from DQ.
Even though it sounds like I went through a lot, I never felt like I could not manage it.
Other than the neuropathy, this is the best I have felt in a year. My MO has told me I will be on H&P indefinitely. I think I can handle it.
BTW, a repeat PET scan in June shows all is stable. My MUGA scan has been good. My MO only wants to see me before every other infusion.
The Cleopatra study says the median progression free survival is 56 months on H&,P. For many of us, it will be longer than that.
Regardless, I think I can do this for as long as this treatment works. And by then, whok knows what new treatments will be available to us.
Oh, and my hair is growing back I have about a quarter of an inch of new ggrowth. But there's places on my body where I would not mind if the hair never grows back!
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sueopp, thank you for your kind words of my Mom passing. Good to know you have missed some H & P infusions and it's ok. Figured my Onc just said to let me skip it as I have surgery scheduled for next Tuesday so I will probably get H & P infusion later in July.
Hydranne, thank you also for your response about your anxiety. Sometimes anxiety will hit me out of the blue for no rhyme or reason I can figure. I do deep breathing which helps calm me down, and use Ativan if I need to.
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jcfree:
Sorry about your Mom.
If your MO is aware of your plans, he or she can work with you. I have read enough about H&P to know that sometimes they skip a dose or hold a dose to allow your body to recover especially if your heart scan indicates a need for it.
Worst case is they give you a loading dose of Herceptin when you restart your H&P, then repeat a PET scan.
Everything about managing this disease involves open communication with your oncologist. This is a chronic disease, much like diabetes or COPD. I am a nurse and have worked with people dealing with chronic diseases for most of my career. Nobody does it perfectly and life throws us curveballs along the way. You have to be there for your mom. And your oncologist should understand.
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oh sue such wonderful news I am so happy for you.
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