The last time I spoke about Herceptin and it's side effects I proudly said I didn't seem to be experiencing anything other than a running nose. Spoke too soon!!
I had my tenth Herceptin last week and just after the nurse left I wondered why I felt so tired? That fatigued feeling got a whole lot worse and by evening it felt like chemo all over again. Thankfully it had mostly worn off the next day but it did give me a bit of a surprise. I had been told this could happen but was pretty sure I'd managed to avoid it after ten treatments. I have seven more treatments to go so it will be little me off to bed after the nurse leaves 'til well into the next day. Actually when put like that it sounds quite nice!
The other alarming thing that has happened is that my eyelashes have started to fall out again. The air was blue when i noticed. Now, what I want to know and nobody seems to have the answer, is this a side effect of herceptin or a side effect of chemo? My eyelashes did grow back in much longer and thicker than before and I thought aaah a nice reward for months of feeling crap. Again, spoke too soon!! Joking aside I am more than a little concerned that I'll wake up to find them all gone. I found it distressing the first time ( shallow I know when you're receiving life saving treatment) and if it happens again I don't suppose I'll be over the moon. I just love putting on mascara and seeing LASHES. If anyone out there has experienced this let me know. I also want exact timescale of regrowth. Only joking....
As a note at the bottom( Ha Ha) I also seem to have diarrhoea rather a lot and I know this can be a side effect with Herceptin. God, serves me right for being so confident!! Ah well it could be worse, I might have the aching joints or a frozen shoulder as well. Now that I think of it......
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Recent Comments
25 comments:
hey marjorie!
Long time no blog/comment etc. glad you're doing well.
Just wanted to tell you that I have definitely experienced the eyelash/eyebrow phenomena you noticed. Several times in fact! I have 3 more herceptins to go so I think I'm a bit ahead of you and my eyelashes have grown in and fallen out about 3 times since I started herceptin. And grown in exactly 3.147 weeks later (haha). Anyway, it is weird. Eyebrows too. Since I'm really into my eyebrows, I mind losing them a lot more than my eyelashes, and just hope that once herceptin is done they'll grow back again, uh, permanently please!
later
lor/abigail
I am not a blogger and so this is new to me. I too am on Herceptin and have been for 6 months. Mostly I find it very tolerable. But the "weird" side effects are the ocassional runny nose, thin hair and change in hair texture, thin nails and thin skin. No lose so far of eyelashes or eyebrow. I only rarely have the tiredness after a treatment. I did not associate the side effects with the Herceptin until I read some blogs of others on the treatment and low and behold...there they were!
I too am a nurse. Hope you are doing well.
My email is bevjohnertl@yahoo.com
I have a friend that is having a mastectomy today, as I type. I feel so useless. She found a lump over a year ago, when we were in Colorado together, but only went to the doctors last week!
Godbless you, and long may you blog xx hope you enjoy the coffee and Gordon enjoys his cake!
I am so glad to read that others are experiencing fatigue as well. I started last October (every 3 weeks) and will be done Oct 07. I am having a heck of a time staying awake during the day and concentrating during the day. I also am experiencing what I suppose is neuropathy of the feet/ankles. I can barely walk when I first get up but once I get going I am fine. Any one else?
I have been on Herceptin for almost one year. I will have my last treatment in one week. I haven't had any of the eyelash/eyebrow problems, but two weeks into my last treatment I am feeling very weak and I am also having trouble with concentration and memory. I feel almost like I have taken a sleeping pill. The memory/concentration thing could be menopausal, who knows.
I have tolerated Herceptin very well, until recently. However, I do have occasional diarrhea, a small amount of neuropathy and I sometimes get this wierd sensation in my chest and throat, shallow breathing sort of thing. I sometimes think this is caused by the Benadryl and not the Herceptin?? My echocardiograms are showing my heart is in great shape and no weakness. But, all in all, I am very pleased with the Herceptin, and that I haven't had the fatique until the end. Good luck to everyone!!
hI ALL,
i MAY JUST HAVE 2 MORE TO GO...i THOUGHT THAT I WAS HAVING AND INCREASE OF 'SENIOR MOMENTS', AND WAS VERY FATIGUED THE FIRST WEEK OUT OF TREATMENT. THANKS FOR THE INPUT...NOW I KNOW WHY. MY ECHOS HAVE SHOWN A DECREASE IN FUNCTION...HENCE THE TIREDNESS AND OCCASIONAL SHORTNESS OF BREATH. i HAVE A RUNNY NOSE AND A LITTLE NEUROPATHY. THIS WILL SOON BE PAST SO I AM GRATEFUL FOR WHAT THE DRUG IS DOING. jpfcudvxk
Just read blogs as a newcomer and found it reassuring to hear that m ost of what i have been feeling so far is not unusual. I have been getting quite a lot of breast discomfort /pain, have others felt this ? Only into my 2nd treatment.
I am also a nurse.
Hi Marjorie,
I am at exactly the same point as you, with exactly the same things happening to me! It is a relief that it is not me "being funny" and asking for attention as some people said, "Herceptin does not give you side effects" one nurse told me. Oh well only seven more and then this will be done too, from then on only Femara ( that has its own little tricks too!)
Annemarie
I had my second to the last herceptin treatment Nov. 24th. Thanksgiving morning I woke up to find my breast and all around it all red and kind of purple. It kind of scares me. Just wondering if anyone else has experienced this.
Hi all, I was browsing the net and found this site. My best friend is on herceptin and she's been doing great for almost a year. She does feel the tiredness but not much else. However, she is now experiencing a very long period, which was almost over the day of therapy but then resumed and has been now continuing for almost 15 days. Has any of you experienced this? Could this be caused by herceptin. Her tumor markers are negative, but she is very worried.
caterina
i have been in remition for two years 52 treatments of herceptin one of my side affects is heart failer,my back started hurting shorty into treatment.i was told by dr's herceptin leaves the body within 6 months . but my back hurts everyday.is anyone out there suffering lone term side effects such as back aches?
I hope this doesn't get posted twice. I received Herceptin along with chemo for 18 sessions. Chemo ended in Jul 08, Herceptin continued to Feb 09. I still have severe neuropathy in my hands and feet, horrible nails, etc. What really depresses me is my hair. It's been 8 months since chemo ended, so I truly believe the Herceptin retards regrowth since I was getting Herceptin for another months. It's growing but slowly, very thin with bald spots. I still wear hats and wigs because it looks so terrible. Have a class reunion in 4 months, guess I'll have to wear a wig.
Hello--I just had my 3rd Herceptin treatment and I had chills and a fever of 101. I have also had the runny nose and thought I had allergies for the first time. I am glad to read what you all are experiencing so that I get perspective on what is happening with my body. I had limited chemotherapy in conjunction with whole body hypertension (treated in Germany) and had significant hair loss. But 2 1/2 months later I am still losing hair. So perhaps the loss may continue though this year of Herceptin. Anyways thanks for the input.
bethel-7
oooh I'm glad I'm reading this, I thought it was only me with those symptoms, since the medical staff told me Herceptin does not have any side effects (???).
I've been feeling so tired and weak and in pain, specially from the waist down, sleepy and short tempered. Thanks God I have only two more to go. What I'm glad obout is that I have not lost any little eyelashes, last time I checked those little hairs are still there.
Take good care everybody!
Hi there.
As there appears to be no dates on any of these posts - I'm curious to know - how's Marjorie doing ?
regards, Liitle Black Duck
Hi Everyone,
I have been on herceptin since July 09. I have 9 more treatments to go (I am halfway done). I have severe pain in the joint/bone of my left elbow that I did not have before herceptin. Has anyone else experienced this side effect? My doctor says herceptin has no side effects, but I too have experienced the fatigue, concentration issues and thin nails/hair (maybe the doc's need to read these blogs). Blessings to you all!
Has anyone experienced swollen, stiff hands at night that feel better and loosen up in the morning upon usage? I have this symptom and neither my oncologist or my family doctor can tell me why.
Thanks.
I will finish my Herceptin treatment in April, it is now Jan. I've had few if any side effects with it. My hair is coming back nicely after the chemo stopped and I never lost my eyebrows or lashes. My neuropathy is completely gone since Oct. and I haven't taken neurontin since Oct. Thank goodness I've dropped off another drug. Overall I'm very pleased with how I feel.
Now, the problem, my oncologist suggested today that I join a clinical trial where you cont. to take Herceptin another year for a total of 2 years. I was really looking forward to getting this port out!! It bothers me more now than when I had it put in. I guess as the tissue closes around it you feel more tugging and such. Has anyone else been on Herceptin over a year? Did you have any problems with keeping the port in that long? The literature says that prolonged use of Herceptin doesn't necessarily cause worsening of your heart ejection fraction. Mine is good now but I worry about the future. Anyone with any thoughts or experience please email me @ stac1014@aol.com. Thank you.
Oh my..........I am so glad to have found this site as I thought I was loosing my mind. I have three more Herceptin treatments to go and my eyelashes have begun to fall out. I just hope that they come back but I was glad to see I was not alone, especially after I had a nurse recently tell me that there are NO side effects from Herceptin and that any I heard about was simply a lie! My feet and ankles in the morning are so stiff and sore I have to double step the stairs but that does get better through out the day. I also pray everyday to die of old age, so yes I am very thankful for Herceptin. Good luck to all you fellow warriors...........
I had chemo followed by Herceptin which I completed in July 2009. I still feel tired and achy and get more migraines than I did before treatment. My memory problems are gradually improving. I had to stop the treatment after 16 doses as it was affecting my breathing even though nothing showed up in lungs or lung function tests.
March2010
hello marjorie hope all is going well,i have just had my 63rd herceptin and on it until its not working,fingers crossed.I havent lost my eyebrows but they are thning the same as my hair,i am now always feeling drained and tired also have a itchy rash but im just glad im still here watching my boys grow up,wish u and everyone on this drug all the best,,i wouldnt be here with out it xx
Hi this is the first time I have ever posted here, but was so relieved to see that it is not just me that is having minor problems with Herceptin. I have been on it since July 2005 and remain to this day completely free of the disease (long may it last)
In no way is this an issue, as I just want to stay well, but my nails are an absolute mess, and I get terrible splitting of the skin by the nail, especially on my thumbs.
I have noticed some thinning of hair, and a constantly runny nose but not too bad and thankfully my eyelashes are still there. Only lost them during Taxotere.
Despite all that, I believe it is a fabulous drug that has truly saved my life.
Keep well ladies, and power to each one of you.
Lisa
When I had herceptin and Taxol for 11 week in 2009, it seemed toloerable to me. I only had neouraphy problem on my hands and was getting worst with A/C. Now I am only on Herceptin to complete one year unitl Sept. However, I started to experience joint pain on both hands and stiff shoulders and the tangling feeling is worst when I try to stretch my arm out. My feet hurt when I get down every morning and barely can walk. However, it is getting better during the day. My oncologist has no clue what is going on with me...
G - Northants
Hi all,
Reading these posts is so helpful as I was feeling very alone with symptoms of swollen feet and ankles, severe tiredness and bad concentration - I have had 6 herceptin treatments and starting to worry now about losing my eyelashes and brows again after them just coming back after chemo! - people ask how im feeling and I say fine when truth is I struggle to get out of bed and last through the day! - I wish everyone on this site well
my wife is so scared to start her chemo & herceptin treatment so reading what all of you are going through is scary but encouraging. I admire you all for your courage, you all deserve bravery medals! Thanks for sharing your experiences, and I wish you all the best!
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