HERCEPTIN and/or PERJETA Threads
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Hello! I'm curious if any of you on Herceptin and Perjeta only have any of the same side effects as me. Now that I'm 7 months post Taxotere I can see a pattern with my side effects after each treatment. My side effects start about 3 to 5 days after treatment and last 7-10 days. They are:
- Sore spot on left and right side of rib in the identical spot;
- Extremely stiff joints. Especially elbows. I sleep with my arms straight so I don't have to go through the torture of straightening my arms in the morning;
- Muscle pain in upper back and shoulders;
- Sore spots that feel like bruises along my spine. Strangely not where the cancer lesions are.
- Runny eyes if I go outside and it's windy;
- Sensitive teeth;
- And, of course, the runny nose.
Also, my hair grows very slow and my finger nails are thin and tear easily.Thank you for any input.
Karen0 -
Karen: Funny you should mention those things. I knew I had the runny nose and watery eyes from the H & P, but it wasn't until very recently that i also determined that my hair is growing back much slower this time as well. And yes, my nails are doing the exact same thing as yours. They were fairly long, and I kept nail polish on them, and then about a month ago, they started cracking clear down to the OUCH! My nails are growing but slowly and doing some splintering off. As far as bone pain goes, I also have identical pain on left as well as right side of ribs in identical spots, but just thought it was some kind of coincidence. I haven't had any sore shoulder or upper back pain or stiff joints. I really haven't paid much attention to exactly when some of these occur or exactly how long they last, but I'm only on my third treatment coming up toward the middle of January. I walk four miles every single day so I think that helps keep me somewhat flexible. Ann
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Karen, yes indeed, I have the stupid and constantly running nose, the watery eyes and the splintering nails. Since my hair basically stopped growing on navelbine (didn't fall out but thinned badly) the wee little bit of progress on growth has made me happy (!). I don't notice joint pain, but am definitely achey on the muscular side - keeps me awake at night. And then there is the neuropathy - could be much worse I figure - whatever we gotta do, right? SUE
PS: I asked the dentist about the sensitive teeth and gums and he told me to switch to Sensodyne toothpaste and it helped.
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I'm still on Taxotere with my H&P, but I've been quietly trying not to freak out about some rib pain I've been having, thinking it might be new mets.
Mikarae and Teakie - is your rib pain in the lower rib (mostly left side) near the lower part of the sternum? When I had my echo she was jabbing that transducer in the area below my sternum and I thought I would go through the roof!
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hey ladies, ...
Karen I have some of the same side effects...the watering eyes, more so my left, but that I have had since being on Herceptin for 9 yrs straight now, but seems worse with the perjeta and taxatere....I have had a problem with stys on my upper eyelids too, I don't know if that is just from the hair follicle with losing the lashes, or from the drugs...so hard to figure it all out...I also get a bunch of clear mucus out of that eye..stopped wearing contacts a year ago..not worth it...the pain I get in my lung is in the lower bottom of my left lung..at first I thought it was still damage from when I had that lung drained back in March.....worst experience in all my 14 yrs....but it should have healed by now, and that was more in the back...If I sneeze I have to hold that spot of my lung , or ribs....hurts like hell....my nails are non existent...they just are so soft and peel off, I'm just happy to have them not lifting..I do have rings in my nail beds from each treatment... My nose is always running too, and for awhile I was getting sores on the inside from always being wet and cracking... AND my hair normally grows very very fast , is growing at a snails pace now......ughhhh..the fun of it all..!!.. haha.....
Fitz, you and I have been on so many of the same treatments with similar dx....seems our doctors are following the same treatment plans...I was very disappointed to not get into the tdm1 trial, but when it became available I was so excited, knowing how well Herc, has worked for me over the years...My Xeloda was starting to wear itself thin, so he jumped on the TDM1 ...it failed me miserably...I ended up in the hospital with fluid in my left lung..( first time since dx of lung mets) ... Of course the fluid came back positive...I felt awful on it...I guess all the fluid building up...I actually thought I was getting shingles, with the nerve pain I had...At this point we're hoping the Herceptin is STILL working....if the taxatere is now failing me, I really don't know what he is going to try...I haven't been on Navelbine or Abraxane yet........I'm tired too...and stay in my pjs for days now...
.Funny my goal was to stay here to see my boys grow up too...they were 12 and 15 at the time.of my dx....I was only 38 just turning 39 ...Now they are 26 and 29, I want to stay around for the weddings and grand babies...lol..there's always going to be something...!!! ...at 53 I still mentally feel like 40, but my body is telling me NOPE, you're closer to 70...lol...hugs...Klynn....
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Thank you for the responses!
Ann - I find it interesting that you also have the rib pain. Some side effects are just strange. I practice yoga every other day. I can't imagine how stiff and sore I would be if I didn't. Comparable to the Tin Man I assume.
Sue - Thank you for the toothpaste suggestion. I will buy some tomorrow. Do you take anything for the muscle pain? I've been taking hydro-morphone for pain. The meds definitely control the pain but I'm not happy about taking them. I struggle with stopping the meds or QOL. QOL wins every time.
Shutterbug73 - My pain is in the lower part of my ribs. Closer to my arms. It hurts to bend over to tie my shoes.
Klynn - I also have mucous in my eyes on occasion. Sometimes I have crusty flakes dried on to my eyelids when I wake up in the morning. Very attractive.
It's great to have others to compare notes with. Would rather be comparing notes about traveling, family, gardening, macrame etc. and not cancer. But here we are and as a positive we do have each other.
Karen
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Karen, I actually only take tylonal for the muscle aches. I am pretty damned lucky that for the most part I don't hurt much- I know that some of my sisters suffer so. SUE
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I joined the perjeta club last week due to new spot on liver. I have been on xeloda and herceptin for the last two and a half years. Is there anyone here doing xeloda with perjeta? I was a little surprised my onc. didn't stop xeloda and add a new chemo. He said he thought I would still benefit from the xeloda but I haven't heard of anyone doing xeloda and perjeta. Thank you to all of you for sharing your perjeta experiences.
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I haven't heard of xeloda and perjeta, but any chemo therapy agent would work I suppose and if you are tolerating it well, why change?
Question:
Anyone get achy 1 week after treatment. I feel good during the day, but achy at night. like I might have the flu or really tired.
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I do. But I'm achy day and night. It's cyclical. Starts about day 5 and lasts 7 - 10 days.
Karen
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HI all you P/H sisters! I haven't been on BC.org for forever--but here I am again and glad to find this post. Glad to hear so many are doing so well.
Like some others on here I'm nearing my 1 year anniversary of finding liver mets. I finished a regime of Taxotere and P/H May 29th and now I'm on P/H "indefinitely". My Christmas present was a clear ultrasound and PET scan and then an infusion on xmas eve (ugh).
micarae: I have many of the same side effects and it seems to be somewhat cyclical though I'm beginning to think they're becoming more constant.
- Extremely stiff joints. Especially Knees for me and especially when I've been sitting or in the am.
- Muscle pain in upper back and shoulders; plus some neuropathy in the skin on my upper back.
- Pain in my shoulder joints especially at night (though I think I never recovered from the mastectomy and DEIP flap which seems to have affected my shoulders.
- Neuropathy of the tips of my fingers and toes. No tingling or pain, just numbness. (Onc. says it shouldn't be from H/P but it's not going away)
- Thinner than usual fingernails and fragile skin
- Sensitive teeth;
- And, of course, the runny nose.
- Also, my hair grows very slow and my finger nails are thin and tear easily.
I've been hoping that some of the nail and skin fragility and the neuropathy is left over from taxotere but I'm thinking now it's from the P/H every 3 weeks.I do ok moving but one can't move all day and night, can they? I'm afraid to take things that are hard on my liver and my Onc also doesn't like me to take stuff so I end up not even taking ibuprofen which has always been my drug of choice for muscle aches and pains.KLynn--you're an inspiration. I've only been doing the drug part for a year and I feel I've aged a decade.OH, infusion is over for today--gotta get the H___ out of here!0 -
Welcome back, MicheTheVanquisher. So sorry to hear about the muscle aches people are experiencing
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i need to ask, how "normal" is life while on continued therapy. Right now I'm on taxotere, perjeta, herceptin, neulasta, and a bone strengthener. I'm stage iv with bone mets, just had my 2nd Infusion a week ago and am already tired of all of this. What's the new normal going to be like?
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Hi banderso - my new "normal" is living with the side effects I've listed above, going to doctor's and scan appointments and all the while doing most of everything I did before diagnosis. I have days when I am tired of all the commitments and days when I'm sad and scared of the inevitable. I am slowly forgetting how I felt pre-diagnosis and I keep trudging on. The greatest and only gift this disease has given me is an incredible feeling of love and gratitude that I didn't take time to recognize before. Hope your side effects are minimal. It's tough. We are all here for you.
MicheTheVanquisher - Thanks for the input. I am glad others are experiencing side effects similar to mine. Misery loves company.
Congrats on the clear scan and ultrasound! I just had a bone scan and CT scan this week. Will get the results next week. Scanxiety...0 -
KLynn-you're my new hero as well! What an amazing job of keeping your head up and keeping on over the years!
Banderso-for me taxotere was just miserable. After dropping that (6cycles) life got so much better. Sure I've got a lot of the same complaints as everyone else, but on just H&P I can work and keep up with my family. Hang in there, hopefully you'll get a good response and get to drop the T!
My big fear is how will it be when I progress and need chemo again. Well, I'll just have to suck it up when I get there! But I've gone 17 months on targeted therapies alone, and it's been really great.
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Banderso- I have had 6 rounds with Taxotere and the first round was definitely the worst. Everyone reacts differently, but hopefully you will find that your symptoms with round 2 are not as bad.
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I was hoping things were going to be better this time around, then I got the neulasta injection....
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Carla, I too am already starting to worry about when (if ?) I progress and have to go back to chemo. Wish that I could put it out of my mind - not productive to go there, I know. So glad to hear that you have 17 months under your belt. I've been planning to worry when I hit 6 months. Cancer makes me crazy! SUE
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Sueopp-It sure does make you crazy! Last weekend I had 2 days of what I guess was a virus-no appetite, no energy, body aches-and I felt so panicky because it reminded me of chemo, and then my mind goes right down the rabbit hole, what if this and what if that....You have to stay in the present but man is that easier said than done!
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I've been on h and p since march 2013...almost two years. It's still kickin butt! Hold on to that hope. We will cross that bridge when we come to it...but not for a while!
Banderosa--for me, the neupogen shot was the worst part of it all! I had so much Bone pain. I felt like I was wearing armor around my chest. Get through the tax and it will be so much better!
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Whoa nelly...I'm hoppin on the runny, drippy nose (add the scabs inside..ouch), peely nails (I do keep them super short so they can't peel), right rib pain (is it my liver...nope) wagon! Oops...add sore gums (which are better since Navelbine left, but still bug me a little). If we all move to So Cal the watery eyes may improve. I've been visiting my son's fam & I've worn mascara~a lot~and eyes haven't watered! At home in Seattle~ugh.
CarlaK~Like my east coast buddy, Sue~ I'm holding on to 17 months~big time!!! Coming up on 3 months of "just" h/p/femara..I'm hoping for a stable relationship!
Question: who else has an AI added to h/p...and who gets zometa, or other bone "additive?" With end of 1st dx txt, I had femara/zometa...after 2nd dx, only femara, now h/p/f....I'll be asking new onc on 1/27, but wondered about others?????
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RonnieKay: I get Zometa with every treatment of H & P. I think my protocol calls for having it forever. Ann
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I too am getting bone treatment along with the H/P, denosunab is the shot. I too have all the SEs listed by Mtichthe Vanquisher and consider them a small price to pay for being NED and feeling as well as I do on this regime. I am crossing my fingers and hoping for a long run. I started Sept. 2013 and had to take 4 months off due to cardio toxicity. Resumed once my heart repaired itself and now take heart meds as maintenance drugs daily. My onc is hoping I'll still be on it in a year. I'm hoping too.
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Thanks for sharing good news K and Carla. Lots and lots of progression free months - that's what I'm talkin' about! My reading tells me that this happens more often when the H & P were the first line of treatment - was this the case for you? I am an old war horse - been doing this Stage I V thing for over 4 years. Not that I pay much attention to the stats - I find that by the time the info filters down to us, it's already old and outdated. Keep on dancing, ladies. SUE
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Banderso: once you're through chemo the H/P is a nothing really. I can't speak for Zometa or other drugs as I don't get anything added (I have liver mets, not bone). But at 57 I'd probably be feeling a lot of these "side effects" anyway. And many of them are minimized my taking care of myself (regular exercise, good diet, staying hydrated, not abusing myself physically and not perseverating). Shoot, I've had tons of body aches over the years and I've had knee surgeries and car accidents and falls from horses, skis, bikes, mountain climbing....weird if I didn't have aches and pains, right?
It's not the drugs that are bad about the new normal, it's the anxiety, the anger and despair, the self monitoring (unless perhaps someone was already a hypochondriac : ) ), the going to the Onc. and cath lab and radiology and Being Tethered to the Cancer Care Center! What, I can't go away for a month or two? As CarlaK suggested the rabbit hole is your worst enemy, your mind that can take every pain or weird feeling as proof that the cancer is moving, morphing, and just making light of your life. Your mind which can convince you that the drugs or cancer is making life miserable and impossible when actually the drugs are working well and yes, while you have cancer for now it's (probably) not killing you yet. If you get a chance with cancer (meaning it's not one that does you in right away) then the least you can do I suppose is let it kick you in the butt to get going on Big Dreams. I'm not there yet. I'm still in the recovery of the recovery of chemo. Chemo wasn't so bad for me til #5 & #6 then it took months to recover. Now I seem to be in a post chemo, post tumor funk.
I had scans in December because I was having a lot of pain in my liver area. There was nothing on blood work or tumor markers or anything yet I was convinced the shrunken desiccated non-existent tumors were back just in time for my birthday and Christmas. So my very sweet oncologist ordered scans. And when they came back clear I felt a huge relief. I realized I'd been worried for weeks or more. That's the sort of thing that sucks in my opinion during my first year (of hopefully many) of these drugs.
The new normal is not my before cancer state, I'll never be there again (unless they find the magic bullet for HER2+) and I'm not "blessed to have cancer". The new normal is I guess for me controlling the anxiety and doing what I can to keep tumors from coming back since my Onc is doing her darndest, and taking each day as it comes and doing the things I love to do, and accepting that I might on any day do that thing well, or do it in a diminished state but I can still enjoy being here, wherever that is.
Don't know if that helps. I remember being very angry and in utter despair to be told: you have cancer, likely you won't live long, we'll put you on drugs that make you feel like shit for 5 months of your vastly shortened life. This was just after putting my 89 year old mother in her final resting place.
Just my 2 cents.
Miche
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thanks everyone. Just really down right now. I've always been very independent and am a person who does best staying busy. This is super hard. I am a mom to two boys (15 and 13), breed Schipperke dogs, show Netherland Dwarf rabbits, and work fulltime as a Cad drafter/CNC programmer. and I love to fish and camp.
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Giving you a hug banderso.....I totally understand. Taxotere is a rough treatment...I just had my 11th treatment last week. It's knocking me down but also continuing to zap the spots on my liver. I had my heart set on getting a chemo break for awhile.....but my Dr is not for that idea right now.....She did cut the dose down a little though because I have been so terribly fatigued the last few months. Hang in there.....praying that the taxotere will do a number on those mets. You are in my thoughts today.
judy
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Hello everyone....darn I hate coming here to whine....ughh I'm normally such un UP person, I just seem to have met my match with these chemos...I have so many bad belly days..do many days in my pajamas now...AND THIS DARN DREARY WEATHER DOESN't help...lol..! .So I saw my doc last week, and I'm going for scans next Monday, don't see him until the following week for results....so I have a while before I know what's up.....I 'm not one to freak over results, I've always figured I can't change them and there's not much I can do about them myself, so I leave it all to Doc....it's what he gets paid the big bucks for, let him do the worrying..haha...So my last tumor markers both came back with a jump....And MY marker numbers have always been very accurate....if they are up, there will be progression...I just hope it's only one nasty one that is being stubborn....hell, if it gets big enough, and is in a good place I may just have RFA done on it again...the two I had done years ago are dead, with NEVER having any activity again..AND it was a pretty easy surgery...( of course I had a little glitch, but that's just me...lol) ...otherwise everything worked out fine...since then I haven't had any tumor big enough, or at least in the right area to do it...SO , I'm hoping that maybe if it is progression, that the RFA isan option again.....not in the mood to be switching chemos again, I was hoping to finish up the taxatere, and ride on the Herceptin and perjeta train for awhile......I will keep everyone up dated....
Nice reading about everyone that is feeling good, or having good results....it's always the hopes that we get our "time" between different treatments, and those breaks are what keep us going....
Banderso, I will keep you in my thoughts for things to change for the better this week for you....Remember, when feeling down, there's always QVC, or HSN ( and The Jewelry Channel Network) at your finger tips for a pick me up....hahaha...
Looking forward to Spring....Klynn...xo
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K, sending good karma. Will send positive energy on Monday and look forward to hearing your good news. Fondly SUE
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KLynn....been spending some days in my pajamas too! Glad I am not the only one! I had more stomach issues at the beginning of my treatment....never was sure if it was the taxotere or the h & p. I had to stop taking h & p for awhile because of heart issues...now back on herceptin. Not sure if my onc will let me take perjeta again. Wish that I was able to have both. Hope you will have good scans next week...Will be keeping you in my thoughts and prayers!
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