Who's on Kadcyla/TDM1?
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Thanks to all who responded to about being on Kadcyla for longer than six cycles. I just had my fourth infusion on Friday. My oncologist and I agreed to continue it as long as I can tolerate it and there is no progression.
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Hello everyone, I am beginning Kadcyla in a few weeks and was delighted to see more positive than negative responses to this
treatment. I just finished my final Herceptin treatment May 24th and went a month without any treatment at all and it seemed like
a dream. Last week's PET scan however showed 2 tiny 1 cm nodules on my lungs that are cause for concern. My Dr is surprised
and things they may be estrogen positive cancer cells rather than Her2 cancer cells and is putting me on Tamoxifen hormone blocker.
He is positive that it will knock the cancer cells into remission. Praying that this will be so. I am so concerned about the hormone blocker
giving me MONSTER PMS symptoms like an emotional rollercoaster. Would love some input on how these two drugs have worked together
for others.
Angelsgal57
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Hi Kadcyla Peeps- OK so I'm hitting a mental "rough patch" and just wanted to reach out (as I know you will empathize with my current state of mind).
If you recall, I previously mentioned that my CEA markers started "trending upward" for the past five months. Well, they have now entered into the area of "concern" at 7.1 (three weeks ago I was at 5.2). So, of course my darn insurance company will not authorize a PET scan and will only do so after I complete the CAT and bone scans. I have a CAT scan of my chest, pelvis and abdomen tomorrow morning (I HATE having to drink those disgusting cans of contrast liquid crap!!) and the full body contrast bone scan isn't able to be done until late next week. I truly hate all this waiting and no matter what, my mind keeps going into that dark place of worry and "catastrophizing" (being a social worker, I know this is not healthy but damn, my thoughts can be quite persistent). I told the new onco that Kadcyla was definitely my "drug of choice" and it has allowed me a very good, normal daily routine for the last year and a half. You know drs.-"well, let's wait and see what the scans show"....UGH!!! I've been doing all the "positive" things like spending time with family and friends, hanging by the pool, attending church services, etc. but I just wish that I didn't have this lurking feeling hanging around. Just the thought of going back on the more harsher chemo drugs (for a third time in 8 years!) is so daunting and discouraging. Thanks everyone for letting me whine a bit-you all are the best!!! Wishing you all a great week ahead!
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Fran, I’m so sorry for what your insurance is putting you through. It seems illogical to me and oh so frustrating.
I don’t have any magic words. Just keep those positive actions going and be with people who lift you up. This mbc trip is difficult. This is the place to come and vent.
Hugs
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Fran- thinking of you. Just went through the change from kadcyla so I appreciate how you are feeling.
Best wishes and hoping for the best
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Fran,
My thoughts are with you. I hope you do not have to switch from Kadcyla to something harsher. The waiting is the worst.
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has anyone had their Kadcyla dosage dropped? I had ny third treatment July 2 and have slep almost the entire 9 days since. I went in today for fluids. They are going to check heart and lungs too. But, reducing the next dose was also mentioned.
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Fran, so sorry to hear that you are struggling through a rough patch. It is so anxiety inducing to have to wait for tests to be done and then for results to come in. I can relate to your feeling that Kadcyla is your “drug of choice". I feel the same as it has been a very manageable and effective treatment for me too. Several months ago I also had a rise in my tumor markers which, unfortunately, was correlated to progression in bones. But, as the scans showed only one active bone lesion, I was able to get that spot zapped with SBRT and then stay on Kadcyla. I just had my 6-month scan post-SBRT and the bone lesion is still quiet so I'm still on Kadcyla. I wanted to mention this to you because even if your scans come back showing progression, which hopefully they won't, but if they do, you may still be able to extend your time on Kadcyla. We all hate to hear it but when your onco says “wait and see,” that's really all we can do. Ugh! Hoping for the best for you! Please keep us posted.
Kaption, I haven’t myself experienced a dosage reduction but nor have I experienced such fatigue. It could be a reasonable step to take but glad your team is also looking for other reasons which might explwhy you’ve been so sleepy. Hope you get to the bottom of it.
Take care everyone!
M.
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Good morning everyone! Hope today has everyone smiling for one reason or another. I've had a busy last few days and am enjoying a few, quiet calm minutes to myself with a cup of coffee. I'm happy to report that my CAT scan did not present any areas of concern so now I just have to wait to have the bone scan completed on Thursday & we can go from there. Thanks to everyone for your words of support and encouragement-it really does help during these "ups and downs". Wishing everyone a beautiful day and I'll keep you posted
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I have had dose reduction a few times and had a spot on my rib come up, which they did 5 targeted radiation treatments on.
Now same spot on rib is lighting up and oncologist is prescribing Zometa once every 6 months (I wouldn't go on it more frequently for fear of necrosis of the jaw). Now been having even lower platelets than what I had been having). Anyone else had that happen? Worried about that.
Oncologist and I talked about perjeta and herceptin next, but I won't do Taxol. Taxol ripped the heck out of me. Took away all of my quality of life.
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I have been on TDM1 for about four months, and it is tolerable. I still have neuropathy from the earlier treatments of Taxol...along with Perception and Perjetta...does anyone have any experience with treatment plans AFTER Kadcyla...I may be approaching that fork in the road and would love some perspective on post Kadcyla regimens. Thanks and best wishes to all.
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I was on Kadcyla for 3 3/4 years until it failed to stop my chest met nodes. I then went on a clinical trial of Poziotinib and in only 8 days, my tumors were gone. I am now on Xeloda with Herceptin for maintenance until the nodes come back.
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Thank you Denny123. What a long stretch with Kadcyla. TDM1 seems to be working, but it has caused my liver numbers to go up, as well as the continuous drop in platelets. I am hoping to be able to stay on it longer, before switching to Plan B. Thanks so much for responding. How did you fare with neuropathy? The Taxol took its toll and I wish I could get that to go away. Have a wonderful; day.
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Stowe-I had some neuropathy 16 years ago from Taxotere, but that got better. (Can't remember how long it took to get better). My fingertips and toes are somewhat numb now from the Xeldoa, but tolerable.
I am only on 2,000 MG a day of Xeldoa, so that is a low dose.
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Question. I've been on Kadcyla for almost 5 years. My platelets always go lower but come up to 90s before next treatment. Today my platelets are at 73. Last treatment I believe they were 85 and after I had several very scary bloody noses, and my gums bled profusely when brushing. The bloody noses and gum bleeding has stopped, but did not feel comfortable taking treatment since we're at even lower starting platelets than last treatment. I'm concerned by the trend that the platelets are no longer bouncing back. I know my length of time on this drug is unusual, but was wondering if there are similar cases out there. Anyone know anyone. This is scaring me
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Gonegirl, thanks for sharing status. My platelets have dropped tremendously with TDM1.
A few weeks ago it had dropped to 55, though has recovered a bit since then. When I go in for my every three week infusion next week, we will see current levels. My oncologist is using a cut off of 50, and then would take a respite to build back platelets. One has to check liver meds as well... they often elevate under kadcyla. ...and represent another reason for taking a pause. Best wishes.
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Thank you so much, Stowebird. 50s is low. Has the oncologist talked about moving to a different treatment?
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Gonegirl, I misspoke. I have been on kadcyla for 8montns not four. My oncologist indicated we would review alternative options if we encroach 50 on platelets. We are watching carefully liver numbers: alk phosphate, ast and alt. So tdm1 helps but the liver and platelet encroachment is of concern. I have a session next Friday so we will see how it goes. Just have to stay positive. Wish I could get rid of the neuropathy. Stay well, stay active, thanks for the feedback.
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Stonebird. I hope things even out for you too. No fun, those scary bloody noses and other side effects. I really appreciate your replying to me
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Ladies, I really appreciate hearing about your experience with Kadcyla, and that some of you have been on it a long time. I've been on it for a few months and will have my second brain MRI on Monday and a CT scan in a week or two. I am grateful that it has been so tolerable, and hopefully it is equally effective.
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Hi All-Well, I have been riding the bad news/good news roller coaster again.... My tumor markers for CEA have been escalating exponentially throughout the summer (bad news). In July, I was authorized to have a CT scan of my abdomen, chest and pelvis and a full bone scan which didn't show anything (good news). Had blood work drawn twice this week and both times my CEA went up and up (bad news). Today, after MANY appeals throughout this summer, my insurance company finally authorized a PET scan which I just scheduled for next week (good news). Gotta tell you-I'm getting VERY TIRED of this up and down emotional roller coaster!!! Typically, I try to be very optimistic and take things as they come but this whole summer-long situation of let's "wait and see" has me a little emotionally beat up (not to mention plain old scared!). I just hate that it appears that Kadcyla might be losing its "magic touch" with me and that no one can seem to figure out what the heck is going on inside my body.
Thanks for letting me vent! Just having one of those "moments" I guess.
Belperron-I do hope you find success with Kadcyla as I did for the last 1 1/2 years. It really is a very tolerable drug that gave me a very good quality of life!
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Fran2014,
The emotional roller coaster is so draining.
I'm glad you got the authorization for a PET scan, although I'm with you in terms of how anxiety-producing it can be. Your experience with Kadcyla gives me hope that I will have some time on it with success. Although it might be naive on my part, I hope that you will continue to have success with it. I am sending good thoughts your way. Please keep us posted.
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Well... at long last my PET scan was authorized and as I predicted, the cancer appears to be showing itself back in 2 of my lymph nodes. I do have an appt. with my new onco on Sept. 7th to see what my treatment options will be moving forward. While I am relieved to finally have some of the answers I was looking for, it does open up a whole new set of "unknowns". My school year will begin next week so at least my mind will be occupied with other things for a bit. Just out of curiousity-anyone out there who has had Kadcyla discontinued due to disease progression? Any idea what's up for me next?
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Fran- I was put back on Xeloda and Tykerb when Kadcyla failed me. Kadcyla was shrinking my liver tumors but I developed over 20 brain lesions while on it, that’s what prompted the change.
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Fran-I was on Kadcyla for almost 4 years, but took a 9 month break during that time when I hit remission. But my chest nodes returned so I was on it again for about 18 months, until this past November when it failed.
I went on a clinical trial of Poziotinib for only 8 days, which put me into remission and am now on Xeloda and Herceptin.
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I finally saw a new oncologist who has a ton of experience with Kadcyla. She's seen this before, lowered platelets that aren't recovering and post-infusion reaction. She said that for the platelets, she could lengthen the time between treatments to address but she's more concerned about the post-infusion reaction since that might get worse and could become serious. Based on that, she's recommending moving to Herceptin/Perjeta without the Taxol since I've been hit with so much chemo via Kadcyla. She's going to check with Genentech to ask about other patients like this and then call me either today or Friday. Based on her experience and the fact that this practice actually has nurse practitioners, I'll be switching to the new oncologist. Such a relief to get calls back. The place I was has no nurse practitioners and so the doctors are slammed and can barely keep their heads above water.
Fran, so sorry to hear about the news. Hope the next treatment is gentle. There are luckily several for the HER2+ crowd to try.
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Hi Fran, where were the lymph nodes? My friend just had them removed, but her treatment plan did not change, and so far so good.. All the best!
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Thanks to you all for your input and words of encouragement. I go to see the oncologist this Friday and see what she recommends from here. My lymph nodes are in my right pectoral (under the surgical clips from my previous surgery in 2015). I will keep you all posted
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Fran2014:
I just going to explain what happened with me, I really don't know if will be help for you and your treatment .
I was in Katcyla and when in Katcyla got back the original Lymb node right side tumor growing again. I was hoping that with the medication will keep it small but didn't happen.
So I went to the doctor and recommend surgery, I was afraid because I know that the surgery is very deep and they will take allot of tissue and Lymb nodes,
So I ask if there was another way to do it with out to be too invasive. So he send me to radiation, they were planing to give me 16 times, and after they were planing to give me surgery ( because the Tumor was very big)
Anyway the radiologist send me back to another doctor radiologist to a main hospital and he give me SBRT ( five times target radiation) and no surgery
So I went for radiation and the Tumor is gone.... And I am continuing with Katcyla,
So I really don't know if in your case will work because the doctor told me that not every case can be give the treatment .
So you will have to ask the doctor.
I hope this help
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Wow! Thanks so much Escorpion for sharing your information with me. I definitely will be discussing this option with my doctor on Friday. Much appreciated!!!
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