Herceptin - Quick Side Effects Poll
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Thank you for this site. Began chemo July 2009, surgeries November and December 2009, radiation Jan 2010, herceptin only every three weeks began in November. 3 more treatments left. Blood counts and echocardiagrams all normal range. Many of the same reactions of others: nasal drip, cracking, and bleeding. That is probably the worst;just as soon as they start to heal, I have another treatment. Also have achy muscles and joints, fatigue, slow growth of eyelashes and hair (but it is growing), and brittle toe and finger nails. Not sure if the inability to sleep is the treatment, because of the menopause brought on by chemo, or just my normal routine. Often is is the pain from my surgeries. It helps to know that I am not imagining these things and that I am on the downhill run. Weight gain was a new side effect for me. I knew I had gained weight and could not lose it, but did not realize the Herceptin might be causing more issues with this. Darn, and summer just around the corner. I do have a question for anyone who might have some insight. I still have some numbness and pain from the surgery sites. I had a lumpectomy and removal of lymph nodes. The areas ache most nights, so much that it keeps me awake. Wondering if anyone might have an idea how long this might last. Thanks again for this site. It is a Godsend.
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tlinder: my surgery was in july 09 and the area around the mx scar is still numb, under the arm is even worse. Only sometimes I get pulsating pain under the arm and a "phantom pain" in the area where the breast was. You had a lumpectomy so I don't know - maybe even more pain, as there are more damaged nerves left (?). You probably have two scars.
I hate this menopause body change. My legs look like my mom's in her fifties.
Jenna
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SE's compared to my chemo are a walk in the park! headaches, runny nose (which may or may not be herceptin - started in chemo, and think it is more related to nose hair loss), watery eyes, occasional cough, and achy joints. Most everything cept the headaches could still be chemo related.... about 8-9 weeks since last chemo, so not sure.
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Hi Ladies- I had my first triple dose of Herceptin on Friday... I am now getting Herceptin every 3 weeks instead of weekly. My SE's weren't much different than what I'v been experiencing. Although, I did not get a headache this time. I had a runny nose all weekend and this is new. The worst is my achy, achy joints from my waist down to my knees. The most madding of all is the weight gain... I gained an additional 4 lbs.
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Cincan,
I gained weight (about 6-7 pounds) during chemo as well, but actually, lost it quite fast afterwards I went back to eating well (which I sure wasn't doing during chemo!) I hear you on the achy joints--I'm 4 months out and I still don't feel like it's any better. I feel like a crickety 90 year old. Even after sitting at the computer for an hour, I get up and have to limp around for a while till the stiffness goes away a bit. I'm starting to wonder if it is more the chemo-pause and lack of estrogen causing it for me than the chemo or herceptin. I could be wrong, but that's just my hunch.
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Weety - I, too, feel like a 90 year old when getting up after sitting for awhile and also very fatigued. I am going to force myself to get on the treadmill after I finish this post. As of this morning, I have gained a total of 10 lbs. To me, this is more depressing than anything else.... because this is the one thing I feel I should have control of.
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Hi
I am due to start Herceptin tomorrow. I will be having this for a year every 3rd week. I had a grade 3 aggressive tumour, HER2 positive 1 lymph node involved. I had WLE and all lymph nodes removed followed by a further op to get clear margins. 4 lots of Fec followed by 3 lots of Tax. 15 blasts of radiotherapy. My last lot of chemo was on the 21st Jan. I have been suffering lately from really painfull ankles which are very swollen and just recently I have pain in the top of my arm and my collarbone, my fingers are also swollen. Does anybody else have these kind of symptoms? I also wanted to know what to expect as regard to side effects from the Herceptin.
Many thanks
Karen
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Hi Kaz1,
you had a different chemo regime - I did not have similar symptoms on AC+Taxol. Did you have Taxol or Taxotere? On Taxol, I had short episodes of pain that would travel from one part of the body to other, no swelling though.
Regarding Herceptin - Weety, Cincan and othes explained very well - joint pain, fatigue, runny nose (slowing the hair coming back...). Also, Herceptin is hard on the heart - you will have to monitor your heart performance during the following year. I was told not too worry as any heart problem from Herceptin is reversible.
Jenna0 -
Hi Kaz1,
Jenna is correct about having your heart monitored during the next year. I had a Muga Scan done before I started and then 3 months later which showed the rate of infraction had come down, so my Onc put me on a Lopressor which is a Beta Blocker to protect my heart from the Herceptin.
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Oh girls...I'm almost sorry I looked at this thread - no offense - I really appreciate everyone sharing, BUT - I guess I've been in denial...I thought my symptoms on Herceptin andTaxol were from the Taxol!
I finished chemo Dec.1, had Surgery (bmx) Dec 18th, another surgery Jan 13 (due to infection) - started rads in Feb and just finished last week.
Have another surgery May 3 to replace tissue expander removed due to infection.
I see onc tomorrow about resuming the herceptin and starting the tamoxifin or arimidex - Was so thinking was DONE with side effects:O
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Bones hurt so bad. just could sleep all the time. headace. numbness weekness in leg and foot.no cancer there.
Could this be from the herceptin, I have ask to no avail.
Broke left arm in 2007 bone cancer.
, The 3 cancer lymph nodes under my arm pushing on the nerve, has caused loss of the left hand and arm. started in Nov 2007
Have taken it since 2005. The Dr said I would have take it the rest of my life. now I have changed Dr.
age 67.1st 2001 her2 breast cancer. lymps nodes under arm. 8 out of16/ postive for cancer. .Then cheno raiduation out 5 years.
lump on shoulder in 2005 cancer. started on herceptin
mest to bones.2007 Then back to 3 lymph nodes under the arm. All the time on herceptin.from 2005 to april 2010
Stopped the herceptin april 2010
went to zion ill. no more herceptin put me on tycarb. xelobe We shall see. so far no side effects. Or that I know Of.
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((((((((lightfoot123)))))))))) gentle, healing hugs....u have been thru it and back again! I am so sorry, wish happiness ahead for you!
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lightfoot123 - Healing thoughts and good wishes are being sent your way!
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Hi!! Agree with you all there are side effects. I was under the impression this would be a lot easier on the body. I am feeling so tired and I achy all over. I also seem to get the flu quite often. I was diagnosed Mar. 6/09 and had a mascetomy on Apr. 3/09 I am Stage 3b and her2+ with invasive and non-invasive it also went in the deep margins. I am so thankful for the site so we can help each other get through our time of healing,
I wish you all the best and can't wait to get back on my feet and my hercetin treaments finish in Sept. Thats when I get my life back in order.
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Hi everyone,
I don't write often these days (I don't check the site but do get email notification of postings on this particular thread). Once you get past active treatment, most of the gals just check in once in a while. I thought maybe you'd like to be reassured that all this will ultimately be in your past and life does get back to normal. I was diagnosed in April (actually 2 years ago to the day) 2008, had a lumpectomy in late May, followed by chemo in July-September 2008, then radiation and Herceptin (every three weeks until July 2009). The worst for me was the chemo (you can check the archives - I had almost all the side effects!!). While I was on Herceptin, I did have some aches and pains, drippy nose, but my hair started growing back reasonably quickly and my cardiac function was good throughout. I worked hard to keep my cardiac function as good as possible by exercising almost daily (1 hour of walking quickly), but maintaining my heart rate under 128 (for my size that was below cardiac workout, but still in the weight loss range). I had gained about 4-5 pounds, but lost it pretty quickly.
I kept pretty active all through my treatments - I did not tell many people about my diagnosis and treatment as I was concerned it would affect future work (I am an independent consultant), and no one guessed I had cancer.
These days I feel very good. I had a scare last month as I felt a lump near my scar. The surgeon decided to do a biopsy to "rule out recurrence". I was on needles and pins for a week until the results came in - just scar tissue! Sometimes I do think about whether it will came back, but I try to think very positively. The one change it has made in my life is an increased appreciation of the good things in my life and a relook at my priorities. I feel blessed to have gotten through it so far, and I found my new friends on this site so unbelievably helpful throughout my treatment. I know you all feel the same way.
Keep up with the positive attitudes! For those of you who read about side effects and panic, remember that they all don't hit everyone the same way, and no one gets ALL the side effects of Herceptin all the time. For many (especially after chemo) Herceptin is more of an inconvenience than a dibiliating treatment. I'm just so glad they discovered the stuff - it gives us a much better prognosis!
Good luck!
Gina
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Gina - Happy Canniversary.... thanks for the positive post!
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I see I'm late posting to this, but here goes:
I'm here now after being diagnosed last July, went straight to chemo with Herceptin, Taxotere and carboplatin. Cancer was 'gone' after 2nd chemo, but I had six 3 week 'infusions' of the triple stuff, then surgery Dec. 1. Tram flap procedure, now on Herceptin until July. I have had the runny nose, the burning mouth, and acidic stomach, all from Herceptin, I'm fairly sure.
Now, out of nowhere, I have acne looking bumps on my face that itch like crazy!! Anyone else have these? I am taking Benedryl to keep them at bay, but they are staying and itching anyway. Also, horrible stiffness in my legs, like a 120 year old lady..... Recent also.....
LaVon
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just a note:
Claritin takes care of bone pain completely, at least for me and everyone I have talked to. My bone pains seemed to travel all over my body, randomly. I found this in a chat room but my nurse knew all about it, but the DR. was surprised, but didn't care if I took it.
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If you'd rather not take extra pills, I have discovered a Benadryl spray (or ointment) that takes care of those itchy spots better than anything I have ever tried (and no, I don't work for the company - I just have a life long tendency to itchy skin exacerbated by either Herceptin or Femara).
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Kaz1 - I took A/C, then Taxol and Herceptin (Weekley for 12 wks) I had been running a 2-3 times a weeks thru all of this...slowly, but I didn't want cancer to control me....around week 8 of taxol, neroupathy and swelling of hands and feet and joint pain got really bad...I couldn't run, I could get my feet into my shoes!!! Finsihed taxol beginning of Dec, started 25 rads, completed that mid January. My liver counts were high for a afew weeks and had to skip H....then started back again and noticed the joint pain...like arthritis i imagined it would be like. I got sick and missed 2 weeks and noticed it got a little better. have a BC sister same treament at me, minus the H. Her joint pain is almost completely gone...I thought it was the taxol, but now know it's the H. My onc said 6-8% will get joint pain....lucky me. Someone mentioned benadryl to me, but my onc said try "Aleve" 12 hour. Not Tylonol, hard on my liver.
I wake up in the morning and feel like i'm 90!!! Just started the Aleve, I will post if it helps!!!
I haven't notice a runny nose, wierd everyone mentions it...I have noticed a slight cough!!
XXOO - Polly
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I have had two mugascans and my heart has not been effected by the herceptin. I finished chemo last month and am awaiting bilateral masectomy in June. My question is for anyone out there who has had a mugascan. After the procedure, I find my back aches for about two to three days after, I am wondering if it is a reaction to the nuclear medicine. Wondering if any one has experienced this. Boy I hate the weight gain, hair is coming back slooooowly. Praise God most side effects have been minimal and are able to be coped with.
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Shrn1 - my MUGA scan last week was my last one! so far good results and only 3 Herceptin treatments left after 14 done - yay - I am graduating from another step in the process.
I haven't had a back ache after the MUGA tests (any more than my usual back troubles). My guess would be that it might be those darned metal beds that you have to lie on. Do you get cushions for under your knees? Lying still like that in an unaccustomed position on a hard narrow surface could well cause back pain. That's my two cents worth.
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My second cancer was diagnosed 7 years after my first on March 2009. Surprisingly, I wasn't too upset since I was already familiar with the treatment or so I thought. As it turns out - the treatment this time around was totally different. This time I battled through Chemo, baldness, mastectomy, perky breasts dream deferred, herceptin and now weight gain (30 lbs and counting).
It seems that I blow up like a balloon everytime I eat and drink. My feet tinkle/numb and some days I'm too tired to get out of bed. Eating plenty of vegetables and fruit has helped with the fatique.
I once thought I was pretty cute with dimples, coca cola bottle figure, blonde hair (thanks to color) and a white sports car. Now, I sport a short mingled gray curly look that's more appropriate for a man and my figure now resembles a butterball turkey. I know I should be thankful to be alive. And I am thankful. Last week marked my last herceptin. Hooray! I sure hope there aren't any more surprises unless it involves me losing 50 lbs by July 4th and staying cancer-free. These are surprises I welcome with open arms.
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BKDimples, my two cancers were dx 9 years apart, so know how you feel! I am right with ya on the surprises you WOULD welcome!!
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BKDimples - your post was too funny. My body feels old and fat with a bald head and severe joint pain. But, what bothers me the most of these 3 SE's is the weight gain....I can't seem to get control of this. I will be on Herceptin through December and this really scares me! It wouldn't be so bad if the weight was distributed evenly....but NO it's all in my torso. I look like Miss M&M...round with skinny legs and arms:(
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BKDimples- I hear ya...I had a very hard time with looking like shit!!! No hair, no eyebrows, no eyelashes.....I never thought it was going to end. However, I am on the other side now and hair is growing...I love it! But I still don't look like I used to....I feel like chemo just sucked the life right out of me...I have wrinkles i didn't have before....As far a weight....I gained during taxol...I ws really bloated. Now, i seem to not have much of an appetite...which I wont complain about!
BKDimples and Gin52 - so sorry that you have to go thru this a second time.....I pray everyday I wont.
XXOO-Polly
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BKDimples and Gin52 - I shall add you to my prayers. Keep kickin it!
CinCan: I will remember the M&M image. I look like that now and I haven't resumed Herceptin yet. Thanks for the chuckle.
To Everyone: I appreciate your posts.
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Lavon--how did the doctors determine that your cancer is gone? My oncologist said there is no test to determine if I am cancer free. They monitor my blood every six weeks while I undergo the Herceptin infusions every three weeks, but told me to just report anything different happening.
phumphrey
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Jenna1961 Thanks for your reply. Yes, I have two scars. They are fading. The numbness I have is slowly diminishing, but the doc says there is no way to know how much numbness will remain if any. It is just a wait and see. I agree with you, this site and all the wonderful people on it have helped me to understand what is happening to my body so much more than the doctors have. They seem perplexed when I talk about the SE and sometimes confused. It cannot be imagined if so many of us have the same side effects. It is good to know that the heart problems with Herceptin is reversible. I have had conflicting information on that, but the last search said the same. That helps ease my mind.
lightfoot123 Sorry to hear about all your troubles. Keep hanging in there. If you are close, Siteman Cancer Center in StL is excellent and even Effingham, IL Cancer Center has good doctors that many speak well of.
I have two treatments left. YEA!!!!!! Hang in there ladies, there is an end to all of this. Can't wait for the reversals. My hair has started coming back and is curly and, thanks to the little bottle, light brown again. We have begun riding bikes for exercise to control and later lose the weight gain. Can't wait to feel my age again.
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I had a left total mastectomy after a lumpectomy for multifocal IDC 5.5cms, where they discovered a further 9 cms of cancer with 3 of 23 lymph nodes positive for metastis. I've had 4 doses of AC 3wkly together with 5 Neulast injections to boost white cells, 12 doses of Taxol & Herceptin wkly, then Herceptin 3 wkly for rest of 52 wks, 25 x radiation, daily Tamoxifen, I use a chest port, I take paracetamol before my infusion of Herceptin which helps stop the aches & pains that come during infusion, I suffer from chills (nurses provide a lovely warm blanket), then I have severe hot flushes and throw it off, I have cold/flu symptoms, runny nose with sores inside, sometimes bleeding, congestion in sinuses and dull headache, my stomach has bad wind which turns into diarrrhea which turns into constipation, I try to drink gallons of water each day, my eyebrows do thin after each dose but my hair has come back wavy, soft & thick. I get small ulcers on my tongue for which I take Olive Leaf Extract, I take daily Omneprazol (indigestion) tablets for acid stomach, my mouth has a metalic taste, my vision is blurred, my nails peel off everytime they grow, my feet and knees are very stiff and sore if I sit for too long, I have nerve damage (neuropathy) in my hands & feet - I find walking up to 3 kms a day helps, also I get leg, feet & hand cramps - I take powdered magnesium & calcium for this, I get pain in my ribs, shoulder where radiated, hips and in my neck and jaw. My Herceptin dose has been increased because of weight gain after ACT treatment caused early menopause, I get very uncomfortable, like pins & needles hot flushes (sweating on forehead) mostly in late afternoon & early morning. Sleep is better lately with the cooler weather but 5-6 hours per night is usual. 3 mthly echocardiogram results went down but are now on the rise. Blood count is mostly good - I eat a lot of fruit & vegies. Fatigue comes and goes, I can't do anything much more than light housework, cooking, clothes washing & grocery shopping. Have found the Tamoxifen has caused me to pee more frequently, also my memory and concentration has decreased significantly which is quite distressing, I think I'm having my last Herceptin dose on 1 June, looking to have portacath removed, apparently there is a waiting list??? then maybe reconstruction from my tummy fat and a reduction on my right side, looking to the future of preventing blood clots, osteoparosis, heart disease, uterine & bowel cancer, high blood pressure, depression and holding my marriage together with no sex hormones comes no libido, just happy to still be here, I am looking to start a light exercise regime after Herceptin finishes in an effort to reduce the weight gain and stiffness. I have found it comforting to read others' stories so I don't feel so alone. Haven't really been told what to look out for if I have a reoccurence, I wonder if there is a blood test for breast cancer markers? Will keep reading and educating myself ...
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