After Herceptin- Did Side Effects Go Away?

Just saw a post elsewhere that reminded me.....HEADACHES!!  I used to get awful headaches while on Herceptin - for a week or two I would be convinced I had brain mets, then all would be well just in time for another tx.

Headaches went away almost immediately

After every stand-alone Herceptin infusion I felt like I had too much blood.  I can't describe it any better than that.  Plus increasingly severe fatigue.  

I finished about 4 months ago.  The fatigue is dissipating -- although it still reappears randomly for no apparent good reason.  

I have pre-existing problems with my hips due to running way too many miles, but the problem is definately more acute.  Age or chemo or Herceptin?  Who knows?  For sure you won't find a doctor to tell you.  

The weirdest thing for me is that within a couple of months after finishing Herceptin, my hair and nails started growing. I used the cold caps (they DO work) and was a little worried about what the roots were going to look like after 9 months of not coloring my naturally blond hair.  Turned out -- not too bad because my hair didn't grow! I had it colored twice between July and January and all of the sudden I'm having to deal with mousy brown and grey roots after 4 to 5 weeks.  In the year from 15 days after the first chemo when all the edges fell out to the end of Herceptin my hair grew between 2 and 3 inches -- not much.   

Same thing with my nails.  My right thumb and left ring finger lifted almost down to the quick due to, I assume, taxotere.  A couple of others lifted half way down but have  grown out.  I have been wearing acrylics on my horribly thin and splitting nails for 25 years.  When I saw the nails pretty much gone, I kept the acrylics on as short as possible just to protect the nail a little bit.  Heat and cold were unbearable without them.  Right now, those nails are lifted about 20%.  

So I had the quadruple whammy of really, really bad nails, many years of acrylics, taxotere and herceptin.  

One popped off when I was sanding a piece of furniture last weekend.  I had been wondering for some time what was going on under there, and when I took the rest of the acrylics off, I was shocked by how little nail was left --  attaching acrylics to the wafer thin remaining nail was  out of the question.  

I am using a product called Rejuvocote that you put on every day (day three).  My mother-in-law gave it to my daughter to try and while her nails are nothing to write home about, they are better than I have ever seen them.  The reviews I have read have been really good except when you have no nail tissue left, it can burn horribly.  I didn't have that, but I am very aware of my nails for about thirty minutes after I apply it.  

I used to bite my nails BADLY and rip the cuticles to shreds -- my fingers were horrible bleeding stumps with every nail chewed way below the quick.  That stopped when I started putting on acrylics so I have been loathe to stop.  Except now I am almost 53 and then I was a very high strung law student/baby lawyer.  

I'll report back on how it works.  If it works on MY nails, it will work on anyone's.  

I'm new to the message board and I'm posting on behalf of my mom.

My mom has been on Herceptin since Oct 2012 and she had no side effects.For the last 2 weeks she has had severe pain in the hip joint.She was scared as we all were but her bone scan was clear.Her doctor is out and we are awaiting his return,however ,is thsi damage done reversible.

Did your doctor put you on some supplements.I am no doctor ,but does taking Collagen c (Type 1 and 3 ) help?

I feel so helpless just seeing this unfold in such a short span of time.

Please post your inputs

I am now getting my Herceptin-only treatments every three weeks and have noticed some of the same side effects mentioned here, joint pain, back pain,  although my nails are fine and I now have a thick head of curly hair.  Here is my question.... Does anyone have pain in the area of their tumor even after it has been removed?  I only feel this pain in the week after a treatment.  Supposedly my tumor ??? was removed after neoadjuvant treatment and when the pathology report came back the treatment was so successful that no cancer was found in the lumpectomy.  So what is this pain?  I told my husband it feels like the Herceptin is attacking cancer... but what cancer?

Thanks for the reply. I notice that about a week after the Herceptin treatment the pains stop.  I guess I can be glad of that.  Still, it makes me wonder if the cancer is all gone or if the Herceptin has its work cut out for it. 

Wow.  And they say there are no side effects.  Really?  I wish the doctors would come on this site occasionally. 

I feel so relieved to read these posts.I finished a year of Herceptin about three months ago and have sometimes been feeling like a malingerer when I read so many posts where people have had few side effects. I'm Her2 low (+1) and was lucky (I hope) to be in the Herceptin arm of the NSABP B-47 clinical trial.

I definitely had/have side effects from Herceptin. I will acknowledge that perhaps the chemo SEs are lingering and are more pronounced due to Herceptin, but whatever the cause, I definitely experienced side effects through the end of Herceptin.

Like many of you, my fingernails were (and still are) brittle, tend to peel and crack, and are ridged. My hair started to grow back last year while I was on weekly paclitaxel and Herceptin, but it grew very very slowly, and as I continued on Herceptin as well. It felt more like soft fur than hair! I had a mild headache for a couple of days after each infusion and I continued to have a sluggish digestive system - bloating, heart burn, weirdly convulsive hiccups, constipation, etc. All manageable, but noticeable. I had severe pain in the right side of my back, under the shoulder blade, for about six months - it began when I had Herceptin every three weeks  Physical therapy, deep ultrasound, and TENs treatments, with heat, helped a lot. The pain went away about the time I finished treatment. Fatigue was worse toward the end.

At three months post-Herceptin, headaches and spontaneously runny nose are gone, digestive system is much better. hair is growing a bit faster, I'm sleeping much much better (in spite of Arimidex induced hot flashes), and my back is ok - Arimidex induced aches and stiffness, but tolerable so far. I'm still struggling with brain fog and fatigue, but hopefully, those aggravations will eventually subside. And the mild neuropathy in my hands and feet hangs on ... most likely from paclitaxil.

An oncologist, when asked about realistic recovery time, said to count the months from the date of diagnosis to the date of last treatment and use that amount of time as a baseline recovery time. That statement sounds reasonable, for some reason. For me it is sixteen months - so according to that formula, I consider myself an active-as-I-can-be recoverer  .... until this time next year! When I think about how I'm feeling on any given day, I try to consider my symptoms from that oncologist's perspective and, if I succeed, I feel more patient with myself and my incremental progress. Baby steps - makes me think of the movie, "What About Bob?' Bill Murray fan here. He reminds me of my best friend in high school, but straying there in not staying 'on topic'. 

I hope this information is helpful - even if no one reads it for a long time .... 

Peace, Martha

I am on my 5th Herceptin Treatment with 12 more to go every 3 weeks.  My side effects are muscle and joint aches, neutropenia, anemia, fatigue, chills, constipation, blurriness and peripheral neuropathy (weakness, clumsiness, imbalance, numbness, tingling, etc).  My main concern is the peripheral neuropathy and all of the symptoms that go along with it since I also have a rare, neurological disease called Hereditary Spastic Paraplegia with all of those same symptoms.  I already had these symptoms, but now they are two-fold.  I hope some of it goes away after Herceptin ends because I can't take no more!  It has gotten so much worse lately.  I fear that it might stay with me for the rest of my life!  HSP also has the visual issues, the depression, and the muscle and joint aches.  I really hope those extra things go away too.  I have been enjoying aqua therapy for my weak and stiff muscles and joints, but I haven't gone in about a year because of this cancer.  I hope this neutropenia hurries up and goes away too since I am afraid to go out to get my aqua therapy and such since I might become infected with something.  Please tell me something good about when all of these might go away!  Even just speculation is fine!