HERCEPTIN and/or PERJETA Threads
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Karen,
I was just noticing more fatigue this week, I have had about 5 infusions since dropping taxotere. I have also noticed increasing body aches, I thought they were from Femara. I started taking cucurmin and trying to walk more and I think it is helping.
Hope everyone has an enjoyable day!
Kim
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Quick Hello and /wave and intro before I ask if I can pick your collective brains
Cliff notes: Got diagnosed end of June, IDC, stage IV (de nova mets to left femur and liver), ER/PR and HER2 positive. Started with the Taxotere/Hercp/Perj cocktail, dropped Taxotere for the third cycle due to side effects (toxicity?) and am still waiting impatiently to be able to eat. Just left a message on the phone firing my onc doctor and I warble between being able to function and coping well like today, and being a puddle of worthless goo in the fetal position on the floor.
So Hi, sorry to see you here and sorry to be here to be seeing you but at the same time thank you for the collective knowledge I've been gleaning off the top of the board. I hope someday since I'm here I can offer something back.
I'm looking for suggestions?: About a week after my second cycle of the Tax/Herc/Perj cocktail I was laying in bed, reading email on the ipad and suddenly everything went blury like I didn't have my glasses on. I've been needing to go to the eye doc, my glasses are 4 or 5 years old now but they have been holding up with minor headachey stuff when I get tired (thank god for being farsighted) but this was new. I literally went from being able to focus to being unable to see anything but a watery screen. I can still force focus at a distance but off and on have to add reading glasses to my glasses to see and overall my script seems to have changed to "must be addressed nao" in the blink of an eye. Asked the onco doc if it was a side effect or if I should call an eye doc and have the script looked at and he replied with an off the cuff, "sure if you think your eyes need looked at call an eye doc" Did I mention earlier I fired him today? My confidence in that doc is actually, if at all possible lower than a negative number so while that whole medical thing sorts its self out I figured I'd ask the experts (as in the people actually, you know... experiencing this crap). Eyesight changes normal? I get one shot at new glasses, do it now or wait for a while to see if its the meds? I had a head scan (MRI) back in early July so I dont think its cancer in the brain or anything. Seems paranoid to think that way but then that *colorful words* doctor I was talking to was waaay too casual about it for my taste, especially given the sudden way it came on like that, and honestly I cant just go to the eye doc any ol time I want, that's why my glasses are ancient as it is. I'll ask the new doc when that sorts its self out but in the mean time, any middle of the road suggestions? I'm tired of the sky falling but I'm not quite ready to ignore stuff either.
Sorry for the wall of text, I ramble.
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Welcome, sorry you are here. After a/c and taxol my eyes were quite a bit changed so I had to get new glasses, unfortunately I immediately was found to have bone mets, now triple positive and went right back into perjeta, herceptin and taxotere per the cleopatra trial. Ever since taxotere, my eyes have been a challenge. I had to have my lenses adjusted and I struggle with dry eyes. You may want to decide if there is more chemos in your immediate future before getting new glasses but I think having your eye doctor check your eyes is a good idea. I wound up with dry patches on my cornea which I am treating with various drops. Hang in there!
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Good to hear from you all!
I am just getting my third treatment of herceptin and perjetA after finishing taxotere in June and I think the most noticeable side effect is body aches like you all are experiencing. I was hoping it was a result of the chemo and that it would get better but it actually seems to be getting worse. If I sit in one position for very long and then try to get up my body is extremely achey and it takes a while to stretch out and get comfortable again. I guess it could be worse and is a small price to pay for keeping the cancer in check. I can't do any extensive yoga or anything because I'm still recovering from surgery but I'm hoping some light excercise and stretching will help me out.
Mascarecrow- I am sorry about your challenges. My second round of TCHP caused a lot of eye problems for me. Blurred visions and headaches so severe I went and saw an eye doc and got a brain MRI. The good news it resolved on its own by the third treatment and never came back. I hope your problems resolve as well. The chemo did wonders for my cancer so if you can tolerate the side effects it could definitely be worth finishing it out.
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had a check in with onc today. All blood work good. Pushing scans back until December! I feel silly because the check list of side effects I get before I see a dr, pa, or np is almost always the same. Back pain, sleep troubles, nausea, fatigue, hot flashes (which is really more of I'm not able to control my body temp), watery eyes, runny nose...the 14th will be three years! I ask about pros and cons of being taken off of perjeta. He said the thing is that no one really knows it's effectiveness and for how long. He said they do know that dual targeted therapy is better than mono. He said I may do fine with just herceptin but why take that chance when I have had such an amazing response with minimal side effects. I agree. The side effects are minimal in comparison to chemo. At the same time, being on15 or so meds is no walk in the park either. I just really feel good about the potential of these drugs and others coming down the line! Hang in there ladies!
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K - my doc gave me the exact same pep talk, although I have only been on perjeta for about a year and a half. It helps me to know that you have been going strong for three years, especially since we share the same stupid SEs - a pain in the butt for sure but def. not as miserable as the chemo. Keep on dancing, K.
And yup, body aches are part of the deal with perjeta I think. I have lately been soaking in a hot bath before bed (like my Granny told me) and it seems to help the aches thru the night (?).
Mascarecrow, I am truly sorry for your troubles, and hope things smooth out for you soon. As one of my girlfriends said, this combo has been so good for my cancer situation that it seems worth it. Hang tough! And definitely the perjeta can cause vision deterioration. Your onset seems mighty fast - my vision just keeps going downhill slowly. The truth is that I have had to have my lenses changed about every six months, and of course, Medicare doesn't pay for it (what's THAT about?). Like you, I am trying to drag it out. Man, the stuff we have to do... Love to all, SUE
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Thank you all! I guess I'll keep squinting for a bit and see where I end up. The kids and dog are getting used to me being a 6 eyes instead of a 4 eyes (or should that be 8 with the bi-focals! ha ha ha) Probably for the best too since I'm falling apart to the stress of it all and really don't need more pressure on me at the moment.
Thank you again and I hope everyone has some fun this labor day weekend!
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Hi Gals...have been visiting southern Cal, seeing GD off to 1st day of 2nd grade (my ritual), & hopping on the plane to get home for GS to come running out of 1st day of 1st grade...all with head lice (sorry next person in 1F on Jet Blue!). The hazards of sleeping w/a long-haired GD who slept with multiple, 7 yr old girlfriends who share everything...Yuck (although other 4 letter words came spewing outta my mouth!). I was about clean when I boarded the plane...$60 worth of non-toxic shampoo later!
So...from the herceptin only guinea pig here...I feel so good it's frightening...as in, I felt good before 3 diagnoses! But I'm remaining hopeful. Energy is so very much improved (was out walking miles at 6am in CA), I really didn't have much achiness, but cramping is just about gone, getting feeling back in toes. Just had eyes checked (had 3 glasses changes in 1.5 yrs) and no real change since Feb (so thinking dumpin Navelbine in Oct helped). Less fullness in ankles, abdomen....maybe I've listed all this....guess no change in chemo brain...LOL! I can't wait to see onc in Oct to ask about new drug.
Mikarae...I've sometimes been low in sodium too, but not to the point of concern. What do they say about it & is that the reason for scans? Staying positive right along with you!
Mascarecrow...uhh...sorry you've had a dr that's not in tune to you! That's a must. We're here for you always!!!
Have so much fun, SUE...I know you will! DH & I just celebrated 42 years of marital bliss. Wish we could have a do-over with the last 6.5 (thanks bc!)...but we're still plugging along happily!
Wishing you all a fun, good-feeling, restful Labor Day weekend!!!! XOXO
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Hey Ronnie! So glad to "see" you, hon. Yeah, the perils of elementary school. The parents in my GD's school have actually formed a semi support group to combat the annual head lice thing, where they share info and work on it together.
I am so, so happy that you feel well - gives me hope. This is a real indicator that we are heading toward putting this stupid disease into the chronic category. You are our front runner, Ronnie, and we are all cheering you on. Keep on dancing my dear. Fondly, SUE
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Hello,
RonnieKay - My oncologists want to be sure there is nothing going on in the way of progression that is causing my sodium counts to be dropping. Of course, I appreciate them being thorough but I do not like the stress that comes with scans. I'm sure we all can relate to that! And thank you for the update on yourself. So happy (and envious) that you are feeling so well and happy belated anniversary.
Thinking of you all...
Karen
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Ug, hate to report negative news. Feel free to skip this if you're looking for pick-me-ups.
TLDR: dx stage IV from the start 18 months ago - had a phenomenal response to treatment - NED on H/P for 12 months. Just dx'd with brain mets.
About me: I was diagnosed stage IV from the start 1/2014 -- her2+, a few small mets to liver. Taxotere, herceptin & perjeta did it's trick and got me to no evidence of disease - some called it PCR, complete radiographic response, and more - PET, MRI (liver & brain) showed up absolutely clean, and it was fabulous. I've been on just h/p since August 2014.
Last month, "new" vision issues appeared. I'd had bouts of blurry vision for awhile but after clean brain MRIs, they attributed it to drug SEs. Recently, very sporadically, wherever I was trying to focus my sight would become completely blurry. For example, when looking at the face of my watch - I could see everything but the details on the face. This would last 5-15 minutes and then pass. Very bizarre - brain MRI ordered, but we were all confident it would be negative - I had an appointment set to see the ophthalmologist.
No such luck - MRI last Wednesday found 2 small brain metastases. It's unbelievably disappointing and frustrating, but seems the best thing we can do is listen to, and be aware of, ourselves. "Funny" part: while it is possible, neuro-docs really don't 'feel' the mets are causing the bizarre vision issue. We'll see.
I had gamma knife this morning, will repeat PET to check for additional progression, and see MO to find out about next steps. We are not considering this a failure of herceptin/perjeta - just lousy luck - so I'm not anticipating any change in drug therapy. Still kinda foot-dragging on researching this new world of crap but am curious about any possible 'preventative' measures.
Meanwhile, I'm still following an 'anti-cancer' lifestyle and incorporate integrative/complementary therapies - strict diet, mindbody and stress reduction daily practices, positivity exercises, lots of physical exercise, tons of supplements (I also see an integrative MO), acupuncture, etc. etc. - basically, the kitchen sink. Just shows how much of a crapshoot this is.
Ug. Got the brain mets news on our 3rd wedding anniversary - managed to still enjoy a fabulous celebration; so proud of dh & myself for putting the right things first. Haven't had a chance for the pity party yet - trying to keep up appearances for dh & rest of the family. I'm so incredibly heartbroken and don't see how sharing that with them would help anything.
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spicypetunia -Thank you for your openness and sharing your story. I find it impossible to put my feelings into words but my heart breaks for you. Your story affects us all deeply. The devastation that this disease creates is unfathomable. Please know that we are all here for you. ~ Karen
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I'm just getting back to this thread after being on vacation a few weeks ago. So much to catch up on!
First of all Spicypetunia – I am so sorry to hear of your recent developments. Look at it this way, whether the mets were causing your vision issues or not, it got you into an MRI machine so that they could be caught when they were still small. I've heard H&P doesn't cross the Blood/Brain barrier, so it is possible to have brain mets even though H&P is working (as I understand it). I'm curious if your doctor monitors Tumor Markers and if they went up before your brain mets were found? I know this is very scary for you and you will be in my thoughts. Please keep us updated on your treatments.
Glad you are feeling well RonnieKay! Sorry about the bugs. Ick! Glad you got to spend time with your GDs though! Happy Anniversary to you and your DH!
Kjones and Sue – not sure if I mentioned it, but my doc said the same thing about Perjeta (and Herceptin) when I brought it up. I said I'd heard of a few women being on Herceptin 10+ years with no progression and stopping all treatment. He basically said "OK, in 10 years we'll talk about it". I plan to hold him to that. (Sue – Pittsburgh sounds great. Is that this week? Hope you are having a wonderful time!)
Josalive – I hope your SE's continue to improve without that darned Taxotere.
Welcome Mascarecrow and Gaia! And a friendly wave to everyone I've missed!
Here's a little collage of our vacation to the Upper Peninsula of Michigan. So pretty up there and we finally made it! (we took over 1500 photos, so narrowing them down has been hard!)
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Oh Shutterbug...so happy you finally got the fabulous trip with DH...you look like an adorable couple & the sights are wonderful!
Spicey...I echo Mikarae's thoughts on your news...very devastating. I detest this disease and the fact that we can't ever be "comfortable"...we have to be "on guard"...and as you say, it's still a crap shoot. I think many of us have experienced some blurriness, which I know I worried about, especially with diminished eyesight. My onc would never consider scanning for brain mets & it was concerning. I'm so glad you were scanned & hope the gamma takes care of the mets completely! The fact that you celebrated your love & committment w/DH, with this weighing on your heart, is amazing. I wish you decades of anniversary celebrations!!!!
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spicypetunia -- so sorry to hear the news. As a partner (and not directly affected myself), I am trying to be rather discreet on here, but since we have spoken when my wife was first diagnosed, I thought I'd add to the messages of support and encouragement. It is crap news, but it is encouraging that your team does not see this as an H/P failure, so that you can stay on the regimen. Marvelous to hear that you still managed to get some quality time for your wedding anniversary ("winning" against this shit disease starts with not letting it define us). Wish you all the best. Stay strong!
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Spicy, count me in as one of your supporters and good friends as you work thru this rotten development. Standing with you. As Shutter said, early is a good thing. I know that cyberknife will blast those boogers to nothing and then you can pick up where you were before this side trip. Onward - you are loved. SUE
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Great pictures Shutterbug! Love the smiles.
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Spicypetunia -
We have a very similar initial diagnoses. I have not yet completed my initial round of THP (I have one more to go), but all signs suggest that I am responding well. I will be scanned in October and, depending on the results, will probably begin the indefinite HP combo. The possible development of brain mets is the one progression that I keep seeing. I read in a few places that the HER2 oncogenes get whupped by H&P and go run and hide in the brain, which is less accessible because of the blood-brain barrier. Cyberknife seems like a great way to treat this, with minimal side effects. My second opinion oncologist also told me that Herceptin can be given intrathecally, and is effective. It sounds scary, but it does work. Be brave, and good luck. My thoughts are with you.
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Does anyone on herceptian/perjecta have appetite lose and digestion problems .
Thanks
Patti
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Hello everyone! Just checking in after being gone for awhile (visiting the Summer Camp during radiation therapy).
Completed 25 treatments of radiation therapy on August 26th. As many of you know, the effects of radiation therapy continue for about a week after treatment ends. And that's what happened to me - my skin became a very deep red, like the color of raw steak. Then the skin began to peel and I dealt with moist and dry desquamation for about a week. That's all healed now.
But our challenges with this disease are never really over. Life on H&P has been peaceful - no real side effects. I noticed an increase in fatigue during radiation therapy, but that seems to have resolved. Still have neuropathy, but that has improved significantly.
While I was on Taxotere, I noticed that I was having trouble with my vision. Taxotere made my eyes water excessively, to the point where I had excoriated eyelids. I thought that was the reason for the problems with my vision. After we stopped Taxotere, the excessive tearing stopped but the vision in my left eye never cleared.
I went to see the optometrist last week for an eye exam. I was diagnosed with bilateral cataracts, with the left eye worse than the right (which I knew). Glasses don't improve my vision. I'm set to see an opthamologist at the end of the month for an evaluation for cataract surgery.
I thought I would share this link with you all:
Wide Range of Cancer Treatments May Produce Ocular Complications
In my case, I was on steroids while I received Taxotere, and that's the cause of my worsening vision. The optometrist told me that I don't have glaucoma and my retina isn't damaged.
I don't really think much would have changed in my treatment plan if I had talked to my MO about this sooner. We would have waited until I finished Taxotere and radiation therapy before scheduling cataract surgery.
Meanwhile, I have chosen not to drive until surgery, because the vision in my left eye is so cloudy. Thankfully, I see pretty well out of my right eye.
I have noticed there's been quite a bit of discussion about staying on Perjeta or coming off. My MO has said that I will be on H&P indefinitely. Which I'm okay with because I have a rare form of breast cancer and there isn't much data on it (Metaplastic squamous cell cancer that is her2+). So I'm a test case for the effectiveness of these two drugs because they have no data on it. Genentech asked for a sample of my tumor so they can do further research on this type of cancer.
I think we all should be excited about the developments in cancer research. I know someone shared a link about clinical trials for vaccines for breast cancer out of the University of Washington. They're also doing clinical trials at the University of Colorado. The advances in understanding how the immune system fights cancer is amazing. The real and exciting possibility is that we all may be receiving a vaccine for breast cancer within the next 5 to 10 years.
New Clinical Trial for Breast and Ovarian Cancer Vaccine
From what I understand, the vaccines are being developed for two types of breast cancer - HER2+ and something called Mamm A. Both of these vaccines cover the majority of breast cancers.
And just some food for thought:
Should we use fighting words during cancer treatment?
I don't feel like I'm fighting anything. I'm just going about living life the best way that I can. I think of cancer as a chronic disease that has to be managed, like diabetes. There are complications from diabetes that impact the quality of life, but still you manage it.
And I'm not heroic. I'm just dealing with the cards that life dealt me. I don't have any other choice. But the happier I am, the more positive I am does affect my overall health, and that is the most important thing I can do for myself.
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Hear, hear, Pwilmarth! Thanks for the excellent summary and the pep talk.
sj
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Great post pwilmarth! I'm also in Denver and have seen Dr. Borges (from the ont-10 trial) several times. She is wonderful. I also wanted to let you guys know that I spoke with someone from the u of w vaccine trial for stage IV her2+ and unfortunately the trial is on hold due to funding problems. They anticipate it will start again in a few months but they only have 6 spots left and I am #21 on the wait list. It's the only vaccine trial that I can find that I would qualify for. But hopefully more open up and it comes a reality for us all soon.
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Thanks, sj.
Josalive, good for you that you are seeking out enrollment in this study. Even though you are #21 on the waiting list, remember that Phase I trials are early in the process towards FDA approval, which is the real hurdle in getting new treatments approved. There will be phase II and III trials and you can keep yourself available for those, too. And they will need a large sample for phase III.
I'm also happy for you that you are connected to Dr. Borges. I think it's wonderful that we live in Colorado and that we have some of the best cancer doctors in the world right here in our backyard. It means that every oncologist in our area has access to the best treatments available.
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patti- I'm sorry, I have not had any problems with appetite on Herceptin and Perjeta.
Great post Pwilmarth! I'm sorry about your cataracts, but that should be a relatively easy fix. Thanks for the vaccine trial info. It is interesting stuff they are coming up with. Eventually is going to be the next wonder drug! I also don't care for the fighting and was metaphors used when talking about cancer, although I can see why some people do.
Josalive - I hope you are able to get into the trial.
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I agree...great post Pwilmarth! Livin life is the name of the game & so hope this regimen (or some combo of it..wink, wink) keeps us stronger longer than ever thought possible!!!! I'll picking my onc's brain (seems an odd phrase to use in our world!) about the trial in Oct. He's one if the uw researchers & said I'm always on his mind :-).
Hope everyone is feeling good! I haven't been on the boards as much as I wish...and so many threads move so fast, but I know there are a few sisters who are struggling...I wish we could freeze time, and the vaccine was a reality. Prayers for all.
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Morning Ladies
pwilmarth, thank you for your post- everything you expressed resonates very deeply with how I am practicing positioning my mind and heart. Some days though it can be a challenge, but I do have tools and support to bring me around the bend. I ESPECIALLY resonate with not bringing 'fighting and war waging' terms into my wellness process.
I am just starting out here so much to learn. Once my tx is a little more underway I definitely want to research trials and the vaccine and immunotherapy.
This was just a quick hello and I too wish everyone an easeful day!
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Shutterbug, thanks for the response.
I saw your pictures from the UP in Michigan. I grew up in Michigan and I have fond memories of our summer vacations in the UP. And Up North as we used to call our vacations in the Lower Peninsula. Those pictures look so familiar! Fishing and camping. And swimming.
Both Michigan and Colorado are beautiful states, but their landscapes are so different. I don't miss those Michigan winters, but I do miss the lakes. Colorado is so dry.
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Pwilmarth - Glad you enjoyed the pictures. There seem to be quite a few of us on these boards with Michigan ties, either past or present. This was my first venture across the bridge. I was born and raised in Ohio but have been in Michigan for almost 17 years and I never get tired of this state's beauty and diversity. I haven't been to Colorado since I was young, but would love to see more of the west one day.
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Shutterbug, I was raised in OH too. Dayton. I got to see my mom every couple years. I still love OH.
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*waves*
Hiyas ladies! I am 28 days out of my last taxtere and the last 2 days have been good. My taste buds are finally working again and I have been tasting everything! ha- I so need to start a diet but I decided to give myself a week so I can taste everything I have been missing.
Shutterbug-I have joined about 4 coloring groups on Facebook. Hubby took me up to homestead (a day trip) and I found "The Secret Garden" and "The Enchanted Forest" books. They are so pretty that I fear coloring in them..LOL I also told hubby it was all your fault that we spent 100 bucks at Michaels.
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