HERCEPTIN and/or PERJETA Threads
Comments
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Hello and a very happy birthday to Shutterbug!!!
Been busy in the garden this morning and going to see Tomorrowland with my husband this afternoon. We haven't been out to a movie in a long time so I am looking forward to it.
Hugs to you all and the birthday bumps for you Shutterbug.
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HAPPY BIRTHDAY SHUTTERBUG!!!!!
I think everyone is trying to enjoy this beautiful Memorial Day weekend i know I am--am outside doing lawn work and preparing for get together BBQ with my son, DIL, and grandchildren on Monday. Obviously my two cats are enjoying, Isis and Sesser! Here they are pictured doing what they do best--nothing!! They're absolutely worthless as far as helping around the house, but I wouldn't trade them for anything. Sesser (black and white) was rescued from a nearby town called Sesser (thus his name), and Isis came from a local humane society shelter. I love archaeology so i named her after the Egyptian Goddess Isis. Have a great weekend everyone and God bless! Ann.
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Hey Ann! We have two BlackCats too, just like your Isis (Max & Mitzi). Aren't kitty cats just the best ? SUE
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Sue: Yes, they are! My husband and I have sworn to each other that when these two pass on, we will not get any to replace them. They are too much like members of the family, and it will just kill me when they die. Having said that, I bet I run out and find replacements regardless because they are like family living in the house and provide lots of laughs and love! Ann
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Thanks for posting the pics of your kitties Ann. They are adorable! I agree, pets aren't pets, they are family.
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Aw, thank you all for the birthday wishes yesterday! I had a wonderful birthday. My Mom and Aunt came to visit and I took them to my favorite spring destination - a heron/egret/cormorant rookery about 40 miles from my house. They loved it. We sat for hours and watched the big birds fly in and out. The chicks have hatched so the trees emitted a constant low twitter. We saw some of the chicks with the binoculars. When an adult leaves the nest the all pop up like "where did she go?". So cute. If the photos come out well I'll post one here.
I managed not to check my tumor markers until they left today. I was nervous about some occasional bone pain, but the TMs were low and my platelets were back up and hematocrit is just a smidge below normal (platelets and hematocrit have been low since chemo). Whoo hoo! Best birthday present ever! Very thankful to have made it to 42. Now, onward to 43!
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Mikarae - how was the movie? I haven't even been paying attention to what is playing.
Teakie - what beautiful cats! I just want to rub their bellies! I know most cat's don't like that, but we've been blessed with cats that love belly rubs. It looks like maybe yours do too. Love their names!
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Shutterbug: Thrilled for your TMs being low and that you had a great birthday! MANY, MANY more to come! Just keep plugging on! My black and white cat Sesser weighs in at about 15-20 lbs, so it is no easy task to pick that much cat up. I'm trying to get him to do exercises, but he'll have none of that!
Enjoy the rest of this beautiful Memorial Day weekend! Ann0 -
Ann - Sesser is one big cat! I'm jealous I'd love to have a cat but my son is allergic so it's a no go.
Shutterbug - Awesome news on your TMs! That's a great birthday present. Hope your birthday was great. "Tomorrowland" was disappointing. I guess I expected more from Disney. Oh well, it was fun to go out anyway!
- Karen
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I'm sitting here with my Herceptin drip and thought I'd try posting one of the heron rookery pics from my iPad. Here is a Blue Heron nest with 3 chicks. The entire rookery probably has about 30 nests. Last year cormorants and egrets joined the blue herons for the first time. They seem to all live together peacefully (for the most part).
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Fantastic picture Shutterbug! Thank you for posting it. I love animals. I also love photography. - Karen
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Shutterbug: Love your photo too! Nature is indeed fascinating. Ann
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Hi folks, just check'n in - how's everybody doing?
Home from a fabulous time in England & Scotland. Son & daughter in law made us feel cherished and loved, Grandies (aged 4 years & 7 months) were precious and we loved them to death. Edinburgh was amazing: brooding, mysterious, grey stone city seeped in ancient history, nicest people in the world. A walking city, and I did it, walked everywhere and held up fine (so grateful).
On another note, I returned in time to pick up my every-three week treatment, and I have noticed that those wretched leg cramps that have plagued me off and on for months have gone away, even without the bar of soap under the sheet. Makes me think it might have something to do with the warm spring/summer weather. Waddya think, ladies?
Hoping everyone is well. Time to start gearing up for scans in mid-July -EEK!
Fondly, SUE
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Oh Sue...I'm glad you're home safely & even happier you had a marvelous time! Bet the kids (all 4!) were sad to see you go...and can imagine you're planning the next trip to see the "wee" ones...a little Scottish term thrown in just for you :- Im loving the description of your experience...brooding & mysterious...makes me want to hear more! Thrilled you felt good while walking the city!
I just had a science lesson on boosting electrolytes from my h/p nurse. My kidney count was high last tx...they think due to dehydration. Better today, but now I'm probably drinking too much water (all I drink), and I need to add juices or...she says kiefer (sp) is good. She said electrolytes have lots to do w/cramping, etc...I've gotten some in my feet while swimming....but like you, Ms Sue, nothing like those crazy leg cramps...ugh!
Hoping all my h/p sisters are feeling good! Feeling so blessed that this is our sop!!!!
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Welcome home Sue! Sounds like your vacation was filled with love and kindness. Well done on all the walking. Wonderful. And good news about your leg cramps.
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All is well here Sue, welcome back! Sounds like you had a wonderful time. Congrats on the walking and on the new grandbaby.Good news about the leg cramps too. Personally I think Spring cures many ills (except that big one, darn it!) Best of luck on your July scans.
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Hello everyone! I hope to be starting Herceptin and Perjeta next week. We are just waiting for the auth. I have been reading about the txs. I hope it is ok if I pop in here from time to time.
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Hi! I just did my 4th chemo with perjeta and taxotere. It seems to be the way we are headed!
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Welcome Freygea!
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long overdue update... been on break from the boards since mid-November (wasn't intentional, just kinda happened)....
after a clear PET in October 2014, had bi-mx, alnd, expanders, and radiation (finished mid-Feb) all went smoothly. I still get maintenance herceptin & perjeta.
had PET April 2015 that came out indeterminate. they'd expected surgery & radiation sites to show "wonky," but a part of liver very unexpectedly lit-up, too, but not definitively mets. 'cause of expanders I couldn't get MRI to rule out progression as would be usual - tried US w/o success & tumor markers aren't disease indicators for me.
so, moved up implant/expander swap date and I'll get the abdomen MRI a couple of days later - should be around the third week of June. it's not been the most fun waiting period but decided I was on-board with this plan and have been trying to have fun and stay healthy. been doing pretty well at it, too.
hoping to report back in a couple of weeks with all good news.
tgif and best wishes for a lovely weekend & all good reports!
h&p SEs update & other tips, favorite things, etc. my last taxotere was July 2014; 17 months of herceptin & perjeta:
neuropathy: really did improve over time - still get that burning feeling every now and then, but tolerable & I no longer take gabapentin (still taking beneficial supplements & stick to comfy shoes).
fatigue: not sure I'm a good one for this as I went through surgery and radiation this year as well, but don't know where I'd be without methylphenidate (ritalin) - started around 5th round of taxotere/h/p and it helped a ton - with energy & chemobrain, too. stopped taking it around surgery - (figured I needed to rest anyway) and a few other times and it was rough (not a withdrawl thing, allowed for that) - it's been a massive QOL assist for me. found a doc who recommended some creative dosing and it's been great. it doesn't interfere with my sleep at all. in fact, I can take it and still fall asleep no problem if plans change.
chemobrain: getting better. slowly, very slowly. the more exhausted/stressed I am, the worse it is. annoying but true.
digestive: metformin was the BIG big D culprit! for a year everyone assumed it was perjeta - eternally grateful to the palliative care doc who pushed cutting it. within days things got better - massive improvement in QOL - much better sleep (not getting up multiple times a night!), don't have to guzzle water constantly, better dry skin issues.... still not "normal" but it's completely tolerable (I had been maxing-out opium tinctures, lomotil, immodium & other constipating meds - and combos of all of the above - even anesthesia couldn't reign it in!). have heard switching to name-brand metformin may be better but haven't tried yet. also could help that the anti-nausea meds that I take all the time tend to be very constipating.
still getting nausea. just kind of always there but kept well-managed with anti-nausea meds.
heartburn/indigestion kinda cleared-up - not sure if it was just mis-identified nausea though
tinnitus: started about 6 months into treatment & hasn't gone away (multiple brain MRIs were clear) - no biggie, just annoying sometimes
blurry vision: in the beginning it was the compazine that was really driving it - cutting that helped a lot. however, random-ish blurry vision has been a worsening issue. had eyes checked and was told taxanes can have a rapid-aging effect on the eye but other than my eyes getting 15-20 yrs older in the space of a year, all was fine. also get super dry eyes every now and then. haven't found any tricks for the blurry vision yet.
aches: joints get stiff - the more I move, the better they feel. at 35, I look like my 94 year old grandmother if I've been sitting too long. after infusions, muscle aches join the party - general flu-ish feeling is the norm for a few dayas. ibuprofen usually takes care of it though. really not too bad and the more active I stay, the better my body feels.
taste: still fluctuates - but did find out that dysgeusia is the medical term & it's a possible SE for many many meds. seems I'm just prone to it.
nails, skin, hair: nails still weaker than they used to be. I keep them polished and they don't tend to peel off as much. skin is still very dry and sensitive, hair feels like it's growing a couple of inches a year - seems glacial to me, but this is my first time with this. definitely not thicker or nicer... yet.
I know there's more, but, well, chemobrain is still an issue....
other:
anemia: more likely due to radiation than h&p: turns out I'm back to round 8 taxotere-style anemia - literally back down to the same numbers after fully bouncing-back. they're calling it radiation-induced anemia for now and will check it again mid-June. the good news was that it at least gave a reason for a massive increase in fatigue.
makeup: I finally went for the permanent make-up: eyebrows & eyeliner (upper & lower). soooo much better. now eyebrows look fine even if they're still 'molting' all at the same time -- and eyes, huge difference! my eyelashes are still super fine and occasionally sparse so lower eyeliner makes it look like they're actually there and upper helps obscure the spots where they sometimes 'molt' in clumps. doesn't look like I'm wearing make-up - it's very natural - I just look much "healthier." love it. was told to do it when "well" as not ideal to do while on chemo.
fell in love with eyelash extensions, too. doesn't hurt at all - I usually fall asleep while they're done. they look completely natural & fall out gradually as you shed your natural lashes. best part - I look so much more like me again! (my eyelashes & eyebrows fell out months after stopping tax - they've grown back - just not anywhere near how they were)
complementary: still doing tons of "stuff." acupuncture has proven great for energy; supplements good for energy & more; added in a daily protein shake; still doing regular relaxation exercises; committed to daily exercise; psycho-social support stuff moved up on the 'must do' list for everyone on the support team; doing less illness related research; carving-out time with no discussion of illness; actively working on better communication; still keeping a pretty strict diet (mostly vegan+fish, lo-fat, hi-fiber - but learning to be more flexible with myself); and added in infrared sauna wraps (on dr.'s orders & more than 3 months post rads) to help detox from radiation.
still feel like it's a full-time job; still get fed-up with the b.s every now & then; still have frustrating fatigue; still have good days and bad days; still have 'issues' and SEs I'd love to better resolve; and still get sad sometimes; can feel pretty isolated; still learning how to communicate more effectively with loved ones; the list is endless -- but what everyone here said was right - it does somehow get 'easier' to manage/live with - at least that's how it is now.
1 year anniversary was a shock though - sneaked-up on me & kicked my ass - support network kinda fell apart & sh*t kinda hit the fan. (remember though, this was my 1st dx & I threw bi-mx & rads into the mix for giggles) good news: things have been dramatically better since then - something about that rock-bottom effect. even with progression uncertainty, relationships are better and I feel better with myself - it's easier to slow things down and choose my emotions, reactions, etc. - nice to recognize myself more again. it took a lot of work - by me & those around me, too. learning better communication tools was key for us - it's amazing what a "ok, so what did you hear me say" can reveal and how much actually being more open/honest can help.
not the holy grail, but very helpful & a great gender-neutral book (I've only read the 1st book, but heard the 2nd is great, too): Mayo Clinic Stress Free Living
something future folks may benefit from: before mx surgery I asked plastics about MRI-compatible expanders (they do exist) - I didn't get them (although, they had planned to go direct to implant, so maybe not as prepared as they should have been). I realize a tiny tiny population gets these kinds of procedures at stage IV, but am disappointed it was not fully considered. liver surgeon had advised liver MRIs every 3 months to keep a close watch on liver (so much for collaboration). can't bitch too much though - all procedures did go smoothly and things may yet prove to be fine. note to others: try to insist on MRI-compatible expanders - you know, just-in-case.
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Welcome Freygea! I hope you find Herceptin and Perjeta to be easy treatments, as I have. Will you be on a chemo drug as well? I was on Taxotere for 6 cycles before going to H&P alone. Dry eyes and runny nose are my biggest complaints. Hey! I'll take it!
Great to hear from you Spicy! Lots of good tips in your post. I'll be thinking about you and hoping you get good news on your MRI.
I am now 6 months post-Taxotere and have been getting lots of compliments on my hair. When it first started to come in, someone said I'd never want to have it long again. I'd always had long hair, so I blew it off, but amazingly I really like it now! I keep looking at my basket of hair driers and curling irons and thinking "that would make a nice basket for craft supplies instead." I guess we need to take our silver linings when we find them!
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You are a ray of sunshine, shutterbug! SUE
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I totally agree with Sue. Shutterbug you always make me smile!
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Aw, you ladies are the best!
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Hey girls! I started this thread last year on H & P and now have a question of my own regarding Herceptin. Just over the past couple of months right after treatment I have the really non-stop runny nose as i know is one of the typical Herceptin side effects. Is there something over the counter that I can take for this or do I have to do some kind of prescription? Trust me when I say I'm not complaining because as i always say, it's a very small price to pay for life, but was just wondering if anything could be taken for it. My nose is really getting sore! Ann
Shutterbug: I'm very envious if your hair has grown back as quickly as it sounds. I finished my Taxotere treatments about the same time as you, and I only have about 2.5" of hair so far. I can't wait for it to at least get to some kind of length where I can quit wearing a wig, particularly in this 90 degree heat we've been having! Ann
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Shutterbug-
I am supposed to get taxotere as well. Silly me read up on it and see there is a chance of permanent hair loss. Thinking positive and pushing that in my "forget about it" file. I should be getitng a call in the next few days for my first chemo round appt.
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Hey Teakie - Let me tell you a story. One night in February I had a dream that I was at a party on someone's porch, and I was watching a woman with super short hair and big sunglasses, and she was laughing and was the life of the party. I thought to myself (excuse the "French") "that woman looks badass with that haircut", and then it dawned on me that woman was ME! I'm badass! Hell yeah! (Believe me, in real life I'm quite shy and would never be considered the life of the party, but in this dream it kinda worked). The next day at work I spent a few hours training someone at my desk and when I went in the bathroom I noticed that my wig had slipped backward behind my hairline. I did not feel like a badass. I knew it was time to put Betty (my wig) in her box for good (or at least until the next chemo).
So anyway...that night I posted a picture of me without my wig on Facebook and told everyone that my head would be making its debut at work tomorrow (that way I couldn't chicken out, and it gave colleagues time to prepare and not be too surprised). Everyone was so encouraging. Now, whenever I feel uncertain or timid, I remember my inner badass. I think of everything I've been through the past 9 months and I put my head up and walk proud. You've got an inner badass too, Teakie...get yourself some big sunglasses and let her rip!
Here's the pic I put on Facebook in February. My hair was maybe an inch long? Now it is maybe 3 inches or so?
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Hey Ann! The "herceptin drip" - yup, that permanently running nose is a real pain in the ... nose (HA!). In the many years I have been on herceptin I have never found a therapeutic solution. Therefore I have gone with secondary solutions: I keep boxes and boxes of the tissues around the house (the ones infused with lotion), I put in a supply of pure vitamin E cream which I apply to my poor sore nose, and I have bought a supply of pretty, feminine handkerchiefs to carry with me. If anybody has a solution I would love to know it. SUE
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Sue: Thanks so much for your input! My nose is really sore, but it does seem to get a little better about a week or so out from treatment date. I think I will talk with my onc and see if she has any suggestions, after which time i will pass on anything she might suggest. Ann
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I have yet to find a solution for the annoying nose drip. The worst for me, is the sudden attack drip that only attacks when you are talking to someone. Incredibly embarrassing.
I completed taxotere a year ago and my hair is 2.5 inches of super thick course uncontrollable curls.
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