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Old 03-09-2016, 02:30 PM   #21
murphy
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Join Date: Feb 2016
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Re: lingering side effects after finishing herceptin

I finished my year of Herceptin a month ago (after x12 Taxol and x32 radiation). I'm not taking any estrogen inhibitor. I've been experiencing leg muscle pain which increased along with my last few Herceptin infusions. I've been trying to find out if the pains are in fact connected to Herceptin. The drug company is no help—though "muscle pain" is listed as a possible side effect. And my oncologist doesn't know anything about it and just says any side effects should resolve in a few months. Does anyone have any experience with Herceptin and muscle pain?
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Old 03-29-2016, 05:01 PM   #22
Colleen
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Location: Monarch Beach, CA
Posts: 74
Re: lingering side effects after finishing herceptin

@murphy my oncologist is not thoroughly knowledgable of the side effects of perception either. The drug company has "nurses" who go strictly by the drug pamphlet. I would consider a primary care physician or and orthopedic. For many of the side effects I experienced with THP I used an acupuncturist.
__________________
*October 2013 mammogram suspicious lump right breast
*Oct. 2013 Breast MRI reveals 2.5 cm tumor right breast 6-7 nodes positive
*Nov 2, 2013 PET/CT tumor right breast, 6-7 nodes include right axilla and one above clavicle, 3.5 cm lesion on dome of liver
*Nov 4, 2013 meet oncologist: schedule port placement
*Nov 5, 2013 baseline echo 65%
*Nov 13, 2013 start THP six cycles every 21 days
*Nov 20, 2013 blood counts now coming back quickly start neulasta following next treatment, no pain and it worked!
*Jan 19, 2014 syncope, ambulance ride to hospital, cracked a tooth and chipped three, six stitches in chin, CT scan shows brain is ok but am required to follow up with neurologist.
*Jan 28, 2014 PET/CT shows great response to THP
*Jan 28, 2013 echo, all is good 60-65%
*Feb 2014 brain MRI, no missing parts and no extra parts, all clear
*Feb 27, 2014 last treatment with taxotere
*Apr 22, 2014 PET/CT shows complete pathological response to THP amen!
*Apr 22, 2013 echo 60%
*continue vitamin H and P every 21 days until...eternity?
*May 2014 emotional melt down, demand port be removed.
*May 22 2014, biopsy of original tumor rt. breast, no cancer cells in 8 tissue samples, amen
*June 2, 2014 Port removed, happy dance! Just couldn't tolerate the port any longer; it never worked properly and was extremely uncomfortable
*July 24, 2014 echo 60%
*August 28, 2014 PET/CT all clear NED
*Oct 29, 2014 echo 65%
*Feb 4, 2015 PET/CT NED!!!
*Feb 4, 2015 Echo 65-70%
*May 19, 2015 mammogram all clear
*May 19, 2015 Brain MRI all clear!
*August 18, 2015 PET/CT NED!!! amen!
*March 8, 2016 CT w/contrast NED
*March 10, 2016 Echo normal
*June 2016 Echo normal
*September 7, 2016 CT scan w/contrast NED
*September 8, 2016 Echo normal
* stille receiving infusions every 21 days of Perjeta and Herceptin with no end in sight......

"Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age."
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Old 05-26-2016, 12:45 AM   #23
Jedrik
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Posts: 36
Re: lingering side effects after finishing herceptin

I had my eleventh infusion of herceptin yesterday, that is the fifth without any chemotherapeutic agent. I take no other medication.

I have noticed increased neuropathy in the last couple of weeks, mostly in the lower extremeties, but every now a tingling like after hyperventilation all over my body. Especially after cycling a lot hurting legs and feet kept me from sleeping. Last night was the first night those tingling legs kept me awake for quite a while without me doing anything to provoke it. So I guess this will get worse before I'm through. Right now my whole body is tingling.

My shin and feet muscles cramp easily (which they never did before chemo) and about the first week after infusion the lower legs swell with water retention.

My nose is always clooged and sore and will drip readily in cold, after a cold drink and sometimes after a meal (which is really weird).

The skin under my heels and next to the corners of my thumb nails breaks again and again and again which is quite painful at times. The skin between my labia gets sore the first week after infusion, too.

My hair does not really grow. Nearly four month after last chemo it is not more than a short pelt: It covers my head, but it is very short, and soft, and has no volume. This might be a lingering or lasting effect from the taxotere, but I don't really think so (which might be wishful thinking, as that might not be reversible).

My nails grow at snails pace, too. There are still quite noticable blackened bits from chemo. I guess it might take them two more month until they will be grown out and the new growth appears to be quite a bit thinner.

Some of those gastric side effects are probably due to herceptin, too. Especially the first couple of days I feel a bit queasy, forever hungry, and I need to burp a lot.

Recovery from sports and healing of wounds and bruises is seriously delayed.
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Dx 9/17/2015, IDC/Paget's, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ at age 57
Surgery 10/6/2015 Lymph node removal: Sentinel
Chemotherapy
start 10/19/2015 Carboplatin (Paraplatin), Taxotere (docetaxel)
Targeted Therapy start 10/19/2015 Herceptin (trastuzumab), Perjeta (pertuzumab)
Surgery 02/23/2016 MX Left, PMX Right
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Old 05-26-2016, 07:47 AM   #24
Colleen
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Re: lingering side effects after finishing herceptin

@Jedrik - I had similar side effects that lasted and /or eacalated after dropping the "nasty" part of the chemo regimen. My neuropathy worsened for close to a couple of months after the taxane was dropped. I finished the taxane in February of 2014 and five months later I had a lovely gray "buzz cut" for my daughter's wedding, not what I was expecting. I had thought I would have a bit more hair 5 months later but nope didn't happen. My hair has grown but I keep it short, so much easier, and the gray is gone (cut off over time). My nails are thinner now so I also keep them quite short, I don't think they will ever be what they once were. I use a nail strengthner but do not use colored polish as it seems to negatively affect them. I too experience mild weird cramps in my feet and legs but try to constantly keep my electrolytes balanced. I love to swim and cycle regularly. My neuropathy has dissipated over time but is not completely gone, some nights are worse than others which is usually a sign I am over tired and need rest. As for the nose drip this is initially caused by hair loss, we lose hair "everywhere" including the lining of our nose. Without those tiny hairs to filter we drip drip drip. Somedays I thought a tampon in my nose might be a good idea :-/ The drip is better and comes and goes. I too spoke with the people at Genentech and is all they do is read the "box label", my oncologist is not much better. When I tell her these things she looks at me like I have two heads. Also my eyelashes and eyebrows never fully grew in, so I color on eyebrows every day and only wear mascara occasionally. Hang in there things will improve, its just a much slower process than we hoped for. Ease into the exercise part, you are not back to where you were prior to the taxane but you will get back there. Read the book Mind Over Medicine, its wonderful. I also used a lot of acupuncture to promote healing.
__________________
*October 2013 mammogram suspicious lump right breast
*Oct. 2013 Breast MRI reveals 2.5 cm tumor right breast 6-7 nodes positive
*Nov 2, 2013 PET/CT tumor right breast, 6-7 nodes include right axilla and one above clavicle, 3.5 cm lesion on dome of liver
*Nov 4, 2013 meet oncologist: schedule port placement
*Nov 5, 2013 baseline echo 65%
*Nov 13, 2013 start THP six cycles every 21 days
*Nov 20, 2013 blood counts now coming back quickly start neulasta following next treatment, no pain and it worked!
*Jan 19, 2014 syncope, ambulance ride to hospital, cracked a tooth and chipped three, six stitches in chin, CT scan shows brain is ok but am required to follow up with neurologist.
*Jan 28, 2014 PET/CT shows great response to THP
*Jan 28, 2013 echo, all is good 60-65%
*Feb 2014 brain MRI, no missing parts and no extra parts, all clear
*Feb 27, 2014 last treatment with taxotere
*Apr 22, 2014 PET/CT shows complete pathological response to THP amen!
*Apr 22, 2013 echo 60%
*continue vitamin H and P every 21 days until...eternity?
*May 2014 emotional melt down, demand port be removed.
*May 22 2014, biopsy of original tumor rt. breast, no cancer cells in 8 tissue samples, amen
*June 2, 2014 Port removed, happy dance! Just couldn't tolerate the port any longer; it never worked properly and was extremely uncomfortable
*July 24, 2014 echo 60%
*August 28, 2014 PET/CT all clear NED
*Oct 29, 2014 echo 65%
*Feb 4, 2015 PET/CT NED!!!
*Feb 4, 2015 Echo 65-70%
*May 19, 2015 mammogram all clear
*May 19, 2015 Brain MRI all clear!
*August 18, 2015 PET/CT NED!!! amen!
*March 8, 2016 CT w/contrast NED
*March 10, 2016 Echo normal
*June 2016 Echo normal
*September 7, 2016 CT scan w/contrast NED
*September 8, 2016 Echo normal
* stille receiving infusions every 21 days of Perjeta and Herceptin with no end in sight......

"Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age."
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Old 11-07-2016, 11:59 AM   #25
silvergranny
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Re: lingering side effects after finishing herceptin

Herceptin caused hives for me, but I now take a Reactine before each dose and it has helped to stop the hives. My nose also drips a lot and I have no bladder control. I sure hope this side effect reverses as I hate wearing diapers as they irritate my skin. I finished chemo in April and now have tendonitis in my right wrist. Apparently this is a known side effect of chemo and being right handed, it is difficult to function without a lot of pain. Thankfully, my heart function is good.
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Old 11-09-2016, 05:36 AM   #26
TiffanyS
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Join Date: Sep 2016
Posts: 459
Re: lingering side effects after finishing herceptin

I experienced some lingering side effects, like neuropathy, joint pain and stiffness, after I was done my first round of chemo, and was only taking herceptin, and my doctor told me that chemo side effects could last up to a year after you are done treatment. The joint pain and stiffness eventually went away, however, I still have two toes on my left food that are numb all of the time. My doctor recommend acupuncture, which I will be starting next week. Your side-effects may be caused by Herceptin, but they may also be lingering side effects from the chemo. Regardless of what’s causing them, I hope they go away soon.



12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene.
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that ultrasound and bone scan look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks on, one off for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancerous, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-3 blood test – Tumour markers are normal at 19.
11/16 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!
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