1. < Breast Cancer

Has anyone been on Kadcyla for 55 cycles? Her2+ metastatic disease

Posted by simondsa1 @simondsa1, Jun 12 10:34am

Hello all I am having trouble finding someone who has been on Kadcyla for this many cycles. I’m having low platelet levels and I’ve been postponed treatments for the last few months by two and now three weeks to allow my body to recover. I’ve been on Kadcyla since January 2020 and have received 55 cycles to date with stable bone and lung Mets.
With a smile
Sheila

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simondsa1 | @simondsa1 | Jun 13 7:24pm

Hi I’m just resending in hopes to get a reply from a fellow long distance Kadcyla survivor

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Jun 14 10:43pm

I don’t know anyone who has been on this drug as an extended maintenance kind of timeline. I certainly don’t have an exhaustive knowledge of the members, but when I searched on the breast cancer group page I got a quite a few who have had the standard 14 cycles. Some of those did not make 14 without at least one treatment delay.
I am really glad to hear that you have stable mets. That is great news.
We’re you part of a trial with this drug? How are you feeling?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 21 1:02pm

@simondsa1, I'm tagging a few members who have experience with the targeted therapy, Kadcyla (T-DM1) is a targeted therapy, like @zeerj @maggieb892 @boathouse @timbrownfl @patclem @sandybainy1 @lisakinpa. Like @auntieoakley discovered, not many members have taken it as a long-term maintenance therapy.

Great to hear that Kadcyla has stablized the bone and lung metastases. I can imagine that you are concerned with the delay in continuing for the moment because of low platelet counts. Are the platelets recovering? Will you be able to start treatment again?

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2 replies
zeerj | @zeerj | Jun 21 6:08pm
In reply to @colleenyoung "@simondsa1, I'm tagging a few members who have experience with the targeted therapy, Kadcyla (T-DM1) is..." + (show)
@colleenyoung

@simondsa1, I'm tagging a few members who have experience with the targeted therapy, Kadcyla (T-DM1) is a targeted therapy, like @zeerj @maggieb892 @boathouse @timbrownfl @patclem @sandybainy1 @lisakinpa. Like @auntieoakley discovered, not many members have taken it as a long-term maintenance therapy.

Great to hear that Kadcyla has stablized the bone and lung metastases. I can imagine that you are concerned with the delay in continuing for the moment because of low platelet counts. Are the platelets recovering? Will you be able to start treatment again?

Jump to this post

@colleenyoung @simondsaI had to stop at 10. It was causing me radiation pneumonitis. I had radiation and unfortunately I was part of the 2% to have this side effect. I’ve heard some people with mets swear by essiac tea, sour sop leaves and apricot seeds. I do take apricot seeds daily in hopes to prevent it coming back.

Editor's Note:
When considering complementary or alternative treatments, be open-minded yet skeptical. Learn about the potential benefits and risks. See evidence-based, trusted websites to verify or dispute the claims of supplementary, herbal or alternative therapies:

From Memorial Sloan Kettering Cancer Center (MSK)
– Search About Herbs (cancer specific) https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs/search

National Center for complementary and Integrative Health (NCCIH)
– Herbs At A Glance https://www.nccih.nih.gov/health/herbsataglance
– Know the Science https://www.nccih.nih.gov/health/know-science

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simondsa1 | @simondsa1 | Jun 21 8:31pm
In reply to @colleenyoung "@simondsa1, I'm tagging a few members who have experience with the targeted therapy, Kadcyla (T-DM1) is..." + (show)
@colleenyoung

@simondsa1, I'm tagging a few members who have experience with the targeted therapy, Kadcyla (T-DM1) is a targeted therapy, like @zeerj @maggieb892 @boathouse @timbrownfl @patclem @sandybainy1 @lisakinpa. Like @auntieoakley discovered, not many members have taken it as a long-term maintenance therapy.

Great to hear that Kadcyla has stablized the bone and lung metastases. I can imagine that you are concerned with the delay in continuing for the moment because of low platelet counts. Are the platelets recovering? Will you be able to start treatment again?

Jump to this post

I appreciate you doing this for me, thank you!
My pretty list only moved one point in the last two weeks. It appears that the platelets do recover, but it takes a very long time. I’m just hopeful to find somebody who’s been on it as long as I have. The unknowns are the the worst as you know.

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varsha08 | @varsha08 | Jun 23 1:56pm

All the best to you Sheila.
I am on targeted therapy with Perjeta and Herceptin from 2020 and have completed more than 70 cycles. I have different issue like neuropathy and muscle pain. I have delayed my therapy a few times and seems it has not affected the status.

Hope the delay will not affect your recovery too!

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maggieb892 | @maggieb892 | Jun 24 2:49pm

Sheila,
My time with kadcyla was limited to 14 sessions over 42 weeks. I missed the last dosage because my liver enzymes were too high to continue. I never had a platelet issue. I am almost 2 years post treatment for stage 2 cancer
I know that using Kadcyla for stage 4 breast cancer is somewhat new and appears to be promising. I wish you well in your treatment

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