Perjeta/Herceptin/Taxotere

RonnieKay

I haven't been here for a long while...Spicey let me know some sisters have gone on to hercep/perj only, after taxotere ended. I'm now on hercep/perj and femara (again) only, after 22 mos on Navelbine/hercep/perj.

Talking about neuropathy...I never had neuropathy w/tax/cytoxen/hercep in 09. On this regimen, it started well into txt & got progressively worse w/each txt. I tried L Glutamine, since my onc recommended it, read here & on Amazon reviews, that it worked great. Strangest thing for me was it constipated me terribly! I had to stop after a week. I had a heel injury, which led to my not walking. Once I healed and started walking, like Woody said, it seemed to help. I know it sounds crazy but I had my last navel on 10/22...and I truly think my toes are better. It's probably in my head...but that's fine w/me!! Hoping to be among those who are doing well on hercep/perj...and I think perjeta has some ses that are coming to light...my eyesight has gotten much worse..and I know another sister on my regimen had eyesight changes as well. We're guinea pigs...but gladly if it keeps us on earth!!! Sorry for long post!!!

spicypetunia

interesting, RonnieKay. hmmm, I've had eyesight changes too, but was told by my ophthalmologist that he sees it fairly frequently with chemo - I assumed it was from the taxotere.

he likened it to what he'd expect to see with normal, age-related, worsening eyesight (except in my case, he wouldn't have expected it for another 10-15 years). nothing dramatic, just another unanticipated, thankfully very minor SE.

I'm with you RonnieKay - thrilled to be a guinea pig for a tx that seems to work so well when it does.

RonnieKay

Spicey...so interesting! My eye doc & onc said it was prob just a normal age-related descent...didn't think chemo had an affect at all :-(....but 3 grades lower in 1 year??? My eyesight hadn't changed in 10 years. Our other sis actually had her specialist say it was a specific drug...but she couldn't remember which...my guess perj, since she is in my same regimen & navel has been around forever. Alas...like you said...small price to pay...but somehow we should let the medical community know it may be a se . G'night

Andi67

Hi ladies....I haven't posted in a while either. I've had eyesight changes - dramatic - but my onc. also said it's because I'm getting old! Mine got a little worse when I turned 40, but then did a total nose dive after my chemo treatments. However, you both might think I am crazy, but my oncologist  took me off Perjeta several months ago. At the risk of sounding like a whiner, my neuropathy was terrible....I think I've told you all that before. Seriously unbearable and nothing worked to relieve it. So, since the SE's of Perjeta are fairly unknown (they actually do list neuropathy as one of them) we made a quality of life call and decided to find out if being on Herceptin alone would help.....and I am happy to report that it has. My neuropathy is way better...I am actually having tingling and PAIN in my nerves, which is a good sign. So far tumor markers are normal.  I have a scan next Thursday, which I am completely anxious about.......any progression and I will obviously hop get right back on it.

I would love to know more about the machine from Canada that is FDA approved and stimulates the nerves, and how to get one. I have used a TENS machine, which sounds similar, but didn't have much success with it.

Good to hear from all of you!

Andi

 

 

Shutterbug73

Hm. This is interesting. I've noticed that my eyesight is blurry too, but I've been blaming it on old contacts. I was just about to make an appointment with my eye doctor.

Andi - I've only had 3 rounds of Perjeta/Herceptin/Taxotere, and have had only mild neuropathy symptoms off and on in my feet. How long did it take for you to notice the neuropathy symptoms? Wishing you the best with your next scans.

RonnieKay

Andi & Shutter...holy smokes...there are just too many of us w/tanking vision to use "you're just getting older," don't you think? I know Navelbine for almost 2 years is a big cause of my foot neuropathy...and I'll see if it improves more w/out it...still considering perjeta. I got my new glasses about 2 months ago & I told DH tonight, I already think my vision is worse...yikes...that worries me! I'll definitely bring it up w/my onc on the 26th. Let me know what the eye doc finds, Shutter & Andi...was your onc nervous about dropping perjeta? I know my onc asked for it when they wouldn't approve xeloda along w/Navelbine. I think that was a big, Thank you Insurance!!! Those 2 together would've been a train wreck, I think!!!!

Teakie88

If I'm not mistaken, I specifically remember finding a site somewhere that talked about what they called a temporary eye issue associated with one of these drugs. I have what is called Fuch's Dystrophy where there is too much fluid in my eye, and with these (3) drugs that I have taken also, there were days when everything was extremely blurry. However, since I have just finished up with the Taxotere and am just on Herceptin and Perjeta, it seems that my eyesight has leveled out a little more, so I'm hoping it was the Taxotere that caused it.

Woodylb

Ladies, Perjeta is the main reason fro the eyes, and neuropathy i got only one shot and i am feeling really blurry, bone pain , muscle and the eyes are bad also cough , mucus on and off , as i did only one low dose of taxol and i do not believe it bothered me , too little and too soon . i also lost taste alty or otherwise.

RonnieKay

I'd like to read more info on perjeta, Teakie & Woody. From what I read, I don't remember eyesight issues, but wow...lots if us have the experience! My eyes are very blurry & watery, Teakie...hoping it subsides w/out nav. I found that taking Claritin daily helps a bit...but not much, however, my nosebleeds quit since taking it! And I don't constantly clear my throat...allergy season all year long now!

Teakie...are you doing an AI? Hope we keep stable on just h & p! Woody...I'm sorry about bone pain...does it hurt no matter what you do? I remember you telling me about the olive trees, sand & sea...I would take you out for a walk...to clear our minds & bodies!!! I feel so good when I'm in CA...my body loves warm! My foot neuropathy is so much better there...and then I come home to chilly rain. Tey to eat something to keep strength up! Prayers for quick treatment to do the trick!!!

Threefilets2014

just finished six treatments spaced every three weeks and am told I am in remission but will continue Perjeta and Herceptin every three weeks indefinitely.

I suffered nosebleeds, hives, nausea which was eliminated by small amounts of protein, no neuropathy, do have a cough. Slow hair loss that will hopefully stop now

Woodylb

Threefilets,

The bone pain is more of a skeletal muscle pain the first two days it was imminent but it subsided . I did hot bathes and later a soft massage and it seemed to help. I read all there is to read about Perjeta they wrote it make your eyes watery, they also wrote that you may have other side effects which may not be listed. The worst for me is the mucus in the lungs which comes and goes suddenly. I will tell my doctor tomorrow as i will see him before my taxol session on tuesday for blood evaluation. It is warn where i am and very sunny unfortunately, my MO advised me to avoid the sun since taxol is photo sensitive. So i am stuck mainly at home during the day. But i will take small walks at night. I am happy for your remission , i hope it lingers with you for a long time. Most of us will stay on herceptin perjeta long after this. We are lucky considering a lot of others do not have this option. Thanks be to sciences and God. Be wel

Shutterbug73

RonnieKay - It is interesting that so many of us experience up the eyesight issues. My eyes are not watery, though. In fact it is the opposite, they are so dry I sometimes have trouble getting my contacts out. I do hope it is temporary!

I usually get a dry cough a few days after the infusion, and then a few days when my heart seems to beat harder and a bit faster. It keeps me awake at night because I can hear it when I lay my head on the pillow! I mentioned it to my MO, but he didn't seem concerned. I hope it is from the Taxotere, since I'll be dropping that one after 3 more rounds

Threefilets2014

after remission is it normal to continue Herceptin and Perjeta every three weeks for the remainder of ones life

Woodylb

Ronnie the heartbeat thing , i had one time when i was back 4yeard ago on docetaxel i could hear it one night so hard beating that caused me to call my oncologist who in turn sent me to the nearest emergency and spoke to the doctor there. They hooked me on glucose and performed all the serum tests for heart problem and a complete blood count. It turned out i had too much white blood cell 23,000 caused by neupogen. The glucose calmed my heart and inwas fine the next day. Are you getting neulesta or neupogen?? They could he the cause.

Shutterbug73

Hi Woodylb- Thanks for the reply about the heartbeat issue. I have not had Neulasta or Neupogen, and my blood cells have always been within (or close to) the normal range (knock on wood!). I just hope it is from the Taxotere and not the Perjeta or Herceptin.

Woodylb

Shutterbug, thank God you have good blood count. If your heartbeat is caused by either taxotere or hercept/perjeta it has a solution if the heart is healthy , the important thing is to inform your onc immediately and of course check with cardiologist. My MO informed me today that my heart will be checked every two months. Just keep tab yourself and inform your doctors . Be well .

kwagart

woodylb

I noticed your her2 status changed, mine did as well.

Is your pr still negative? It seems her2+ is fairly rare for lobular. How did you find out about the change?

I am so grateful for h&p, starting that with taxotere this week, then femara or similar in 6 months.

Hope your treatment is gentle to you and nasty to the cancer!

Kim

RonnieKay

Threefillets...WOW....amazing...not losing your hair! That's unusual & marvelous! Yep...lifers on hercep/perj. When I had #2 & then #3 dx, my onc said she knew I was one that needed to stay on hercep, but it was approved for life only stage 4...I was supposedly cured . Let's hope it's our miracle combo!

And Shutter...good counts...such a blessing! When I had taxotere, I had 4 infusions (had hercep for a year), 3 weeks apart & had neulasta twice. With Navelbine, I had it every 5th week. I know the loud heartbeat...I've had that every now & then. It could've been navel or neulasta for me...cause I'm off them now & haven't "heard" it. It's so bizarre!!! Off to dinner...wishing you all a good night!

Woodylb

Kwagart,

Oh thank you God you are only the second person other than me who is lobular turned HER2+. Well you look like her2 almost from the beginning. On my second dx it i lost the Pr and a lower ER+ but still high enough , but the her2 showed +2 i had a FISH it came back negative, the when i went back home i requested a genomic test to be done overseas (Germany) and in order to send it they redid the test it showed +3 another FISH was performed which also came back negative . Three weeks later i received the genomic test results with a positive CISH results with extreme her2 amplification. Showing that my cancer would respond to all her2+ therapies and her2 inhibitors plus taxanes. So i was switched from xeloda to herceptin, perjeta and paclitaxel. I feel blessed because my doctors could not believe the results and were sure after two FISH the results will most likely be negative. They felt relief as they were running out f options. So far at had only one session of all three meds, but tomorrow i was supposed to have my second taxol , i will not be able to take it as my blood is low n every way . I am supposed to have the same as you for six months and if the results are good be put back on hormones plus herceptin perjeta.

I hope this treatment will work for the both of us and the ladies on this thread.

kwagart

woodylb

I had no idea that genomic testing could help with determining her2 status! Guess I have more reading to do. So glad to have bco and women like you to share information with!

I started a thread looking for other +++ lobular women, there are a few of us, some on the her2 thread are not stage 4.

My pathology after mastectomy came back er 99%+ pr 90%+ and her2-3+. Seems like my cancer is an overachiever, ha!

It seems like I have noticed some er+ pr- her2+ ladies doing very well, I am not sure how pr plays into treatment.. More reading.

So glad we have h&p! Keep me posted!

Woodylb

Good morning Kwagart,

It is through BCO that i learned about genetic testing, then my MO back home called it intelligence genetic testing but whatever it was it gave me peace of mind. This test is not covered by any health care or insurance and is quite expensive. I do not know if it is covered in the US since it is not a standard requirement yet, it is still investigational but based on scientific evidence. I am glad i could help. There are very few here on BCO who are lobular and her2+ . I found only one other than me and now you. There is however , new scientific evidence which shows that there are some women who do not show as HER2 positive in tests but they do carry the genes for it , trials are being made to prove or disprove that her2 therapies may benefit them . I hope this is proven soon it will give so many people more time.

kwagart

woodylb

The problem is, I did have genomic testing and all I was ever told is that my oncoscore (spelled that wrong) was intermediate for chemo effectiveness... I will be getting more information for sure! My insurance covered it because the department that did it was "in network". Where are you located?

Woodylb

i am in the middle east we live in Saudi arabia for my husband's work but i am from Lebanon and the test was sent by the american university of Beirut medical center to Germany and it had nothing to do with onconscores . It was the study if my exact cancer and it mutation and genes it said nothing about oncoscores it did however mention which chemo i may benefit from and which i do not , trials and therapies, but this was a tiny part the rest was all genes with some kind of significances to my oncs. The test was called intelligent genomic test. I get treated in both countries with two different teams who coordinate together. My test is not the kind which insurances cover obviously, since we paid 6500$ for it. In all cases you case was clean cut HER2 + mine was very messy i wasted 6 months in different treatments which barely contained my cancer. ILC is generally only 20 to 30% responsive to chemo , from the beginning i was told this because of its low mitotic rate they get the rest of responses from hormonal therapies. This why they seemed to be running out of options before my Her2 changes since i seemed to become anti hormone resistant. If you want a complete confirmation on your her2 you should ask about CISH testing.

kwagart

I am sorry to hear that you had to go through so much to get your answer, it must be such a relief to have more options available. I will keep an eye out for your updates, hoping your next scan shows great improvement!

I am going to track down my genomic testing, it is the only piece of information that I do not have about my cancer.  I am very interested in what the report has to say.  I am also going to try to read up on intelligent genomic test.

I am going to ask about the progress of immunotherapy for her2+, also I am brca2 and there is some studies specifically for brca mutations. I do not understand all of the implications of these studies, I am hoping that more great new treatments are in all of our futures!

Woodylb

kwagart,

Thank you for your kindness and warm wishes the same is returned to you a thousand folds. Being BRACA2 of course will change also for in treatments. My advice to you is to search what is only necessary so you won't get lost in the corridors of cancer. I can tell you though had i not been well informed nobody would have looked further than the FISH. If you like i would share my test results with you so you know what it should look like. I cannot post here because i am using an ipad but i can forward it to your email . In case this help you. I will of course keep posting so it may help all these wonderful ladies on BCO. GGod be with you.

kwagart

I will make sure to keep my research relevant to my situation, you are right about getting lost! I may reach out to you if I have questions about my genomic testing. I will keep posting too. Thank you so much!

Woodylb

You are welcome at anytime )

Romansma

Woody and Kwargart....so glad you two found each other. I'm cheering for you both!!

Woodylb

Hope i hope you join us in the club very soon . I am praying and praying you will . God bless you.

Woodylb

I may not be able to get my taxol tomorrow either, i will go for the blood test and keep my fingers crossed. It seems since the carboplatin my bone marrow is extremely sensitive. So if i get it tomorrow i will have to have 5 shots of neupogen which leaves me only two days as a break and even this i won't get , if it is the week i am getting mt hercept/ perjeta . Too complicated . If tomorrow results are low it will have to be done sunday and thats a lot of days between weekly session .