When do Herceptin side effects go away?

weety

Is indole-3-carbinol a new AI?  I have never heard of it.  Please tell more!

ebarnes48

I had my last herceptin  a month ago,  my nose is finally settling down,  Im still drinking tuns of water as the hot sweats are still bad. didn't loose much on my heart it dropped a bit but nothing to worry about, nails are still  cant grow them and the skin splits are beginning to heal no more sore finger tips.  I'm now looking forward to not having to go  on that 2 hr journey to the hospital every month.

moonwolf

weety911 - No it's not an AI.   You won't get it from your Oncologist!  Have a look at this link.

http://www.canceractive.com/cancer-active-page-link.aspx?n=1417

chs

I've done 10 cycle of herceptin and stopped for about 2 months now (healthcare reasons) for the past 7 months i just felt very mild runny nose, crack nails, hair is growing good, mild shorness of breath, no cough at all. Now on the 2nd month without more infusion i started feeling a seems never ending back pain, shortness of breath, cough and exhaustion and rather worse runny nose...Hopefully next week or so i'll receive the 11'th cycle and see what happens.

Take care.

KorynH

I have been finished with Herceptin for 7 months now. The runny nose stopped after about 3 months after my final dose.  Occasional fatigue stopped after about 2 months off Herceptin. I don't know if was affecting my hair growth or not, but after Herceptin ended my hair began to grow like crazy! My MUGA scan numbers went up after I began exercising last summer. They are at the peak performance now! Stick with it, hand in there. I think for the first 6 months after main chemo it is hard to say what are Herceptin side effects and which one are the remains of the chemo drugs given previously. The runny nose is definitely Herceptin and I am happy to say that does go away shortly afterwards.

Best of luck!

shadow2356

I am glad to hear these side effects will go away. My doctors say herceptin has no side effects. However, I am having muscle and joint pain as well as fatigue. I thought it was left over from the chemo but I finished that on 3/22. I think it is the herceptin. Since so many of you had the same side effects I think I am right.

lovemygarden

According to Genentech, the average "washout period" (length of time that it takes for all of the Herceptin to be gone from the body) is 16-24 weeks (4 to 6 months) after the final infusion. This is a  statistical average. It can sometimes be slightly affected by the patient's dosage protocol (lower weekly vs higher tri-weekly). The norm seems to be running about 5 1/2 months. Herceptin is a large molecule that has a long half-life.

 So although some side effects may gradually start to subside over the first few months PFC, any dramatic improvement shouldn't be expected much before the 5-month mark.

ladybug70

I was diagnosed with high grade DCIS in 7/2009. I received Taxotere,Cytoxan, and Herceptin in each of 6 infusions and then only Herceptinfor the remainder of the year. I have 3 more treatments and am done,done, done.

Have had most of what everyone else has had but also since stopping the chemo when I get warm it feels like I am being stuck with pins and needles on my arms, face, and neck.Not the best thing to have in 100+ summer. HAve brought it up with Onc with no explanations. The fatigue has only gotten worse with each treatment. Can hardly wait to be DONE! Nice to know I am not alone with the pins and needles and itching.

weety

ladybug, I wonder if you are feeling the same thing that I am. . . it feels more like a prickly feeling and I only feel it from my elbows down onto the backs of my hands.  I thought it was part of the hot flashes, but maybe not?  It comes and goes, but yes, I definately notice it more when I get hot.

blondie45

I had 6 months of herceptin and then had to stop due to heart issues. Thank goodness my ejection fraction is almost back to where it should be. Anyhow, did any of you experience ANY problems with your big toes. I had ingrown toenails before my diagnosis but now I have the tenderness and bluish color around the bottom of my toenails on my big toe. I had a cyst on one that I took antibiotics for and just can't get rid of that pain around my toenails on the big toe.

Twinmom77

ladybug and weety - I was getting those pinprick feelings too!  I got mine all over my body.  I had no problems with Herceptin until the end of May when the fatigue started getting worse.  Then I had loss of appetite and those pinprick feelings, lots of headaches.  My onc said it had nothing to do with tx, that I was depressed - HA!  Then I had another doc check my blood counts and they were low.  Onc said that wouldn't make me feel tired - WHAT?!

So I saw my naturopath.  He gave me L-Glutamine for the pinprick stuff and said it might be neuropathy.  No pinpricks since I started taking that.  Then he gave me Hydrogen Boost for the fatigue and man, do I feel like a new person! I had my last treatment July 21st so if I feel this good now, I'm hoping to have lots and lots of energy in a few months!

Blondie - no toe issues but I'm sure someone has experienced that and will hopefully chime in.  But it's good your ejection fraction is back up.

moonwolf

ladybug - I expect you have Neuropathy.  Taxotere will cause that, either during treatment or it can come on months later.  I took Glutamine during treatment and a little while after and have not had a problem.  (finished chemo March 2009).  I don't know if it works once you have it, but worth a try.  Good luck.

moonwolf

blondie - I have had very sore toes when my nails have been cut too short.  Inflamation set in and so I put neat tea tree oil on at night and it soon goes.  Ingrowing nail could be causing it.  Although I think Neuropathy can affect toes.  Good luck.

ladybug70

Hey Twinmom, thanks for the fast reply. Went out today and got both Glutamine and Hydrogen Boost, will start before the sun sets. Cannot believe Onc's do not have this information or will not take the time to find an answer and share...

Moonwolf and Blondie I also had nail problems and numbness in both figer tips and toes. Hemmoraging under all nails and had lg toenail removed due to the bleeding and lvery loose.Lg toenail on other foot growing in very thick and hoping that will disappear with new growth.Much disconfort with all of it. Good luck

chelemybelle

This is the first time I have come on this site.  I am on herceptin 17 doses every 3 weeks.  I am on #13 as of this evening.  I was amazed to see all the side effects.  I was told herceptin was hard on the heart.  My issue's are sore joints, fatigue, dry itchy rash on back and arms and splitting nails.   I had just started back to work at the end of Jan./11.  I am now off work again.  I have had bone scan, xrays, and pills, pills, pills.   This is starting to get me down.  After reading all the others comments it helps.  I was starting to feel like it was all in my head.  I was wondering if anyone knows what herceptin does to the calcuim levels in the bones.  I was diagnosed with Celiac desease 3 years ago and do not get vitamins through my food.  I have to take supplements.

weety

I'm not sure exactly what chemo and herceptin does to the calcium level in  bones, but I do know that after chemo, I was "osteopenic" at age 38.  So, I'm assuming it somehow affects it.

chelemybelle

Went for #13 herceptin last night.  Nurses told me that sore joints are not from herceptin!  My onc. is away have to see other onc. So tired and frustrated.  I feel like I am 90 years old.  I am only 53. When I had my bone density scan 2 1/2 years ago I was borderline osteoporosis.   Is there anyone out there with Celiac desease and HER2+ breast cancer?