Who's on Kadcyla/TDM1?
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Fran- my oncologist moved after 6 years with her. I completely understand. It’s hard to start over again. I found a new MO but our relationship isn’t the same.
May you find s really good fit.
Hug
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Hi All-I just wanted to wish a very Happy Mother's Day to all the "moms" out there. I got to enjoy a lovely breakfast with my mom and my daughter and realized how blessed I am to have them both! Also, for those of you with sons, I know you will appreciate this-my 20 year old actually "planned ahead" and sent me a gift since he is still away at college (see, I guess they really do grow up at some point-LOL). Hope everyone is hanging in there!
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I hope everybody had a nice Mother's Day.
- I am going for a consultation tomorrow to see the Radiologist-oncology doctor. He is going to give me some radiation under my arm and then I will eventually get surgery to remove my Tumor...
Has anybody gone through a similar experience ? What should I expect from the side effects of combining radiation therapy and my current medication; Katcyla,
Thanks.
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Joining your group next week. This will be my eighth line of treatment. I don’t have everything listed on my signature line below. Just know that I’m running out of options. Hoping to find good news on this board. I see a few familiar names.
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Hi Escorpion, good to see you here. It seems like it has been awhile. What’s happened that you are headed into radiation? Have you experienced progression? I had some progression in my spine earlier this year and it was treated with SBRT - stereotactic body radiation which is highly targeted but high dose radiation. In my case, I had only one SBRT treatment. I didn’t have to go off of Kadcyla to have it done though it was scheduled to occur near the end of the three weeks from infusion. I then had my next Kadcyla infusion just days after radiation. I did not have any adverse effects from the Kadcyla nor from the radiation aside from some nausea and increased fatigue for a few days following. I’ve since had an MRI that showed the spinal tumor was stable and PET coming in another month or so to determine whether it is still active or not. And still on Kadcyla. All in all, it was not a bad experience. How are you doing otherwise?
M.
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Kaption, welcome to our little group. I've seen you around on other threads as well. I think you'll find that most of us manage without too many problems on Kadcyla. There are, of course, some common side effects that several of us have to varying degrees such as drippy or bloody nose, a little fatigue and maybe a bit of neuropathy but then, I guess most of us land here after a fair number of prior treatments as well so who really knows how much fatigue, for example, is the result of Kadcyla and how much is cumulative strain on our bodies from all other treatments?
I have found Kadcyla to be a very manageable and effective treatment. I've lost count of how many cycles I've had but it has been about a year and a half and things are still looking pretty good. I just described my recent progression in my last post aimed at Escorpion but aside from hopefully stopping the spinal progression (which has been the stubborn lesion knocking me off previous treatments) my MO wanted the SBRT in order to prolong my time on Kadcyla for as long as possible. That said, our eyes are also on DS-8201 which has been termed a “super Kadcyla" and is looking very promising in trials for those of us who eventually progress on Kadcyla.
Hopefully, you too will find this treatment both manageable and effective!
M
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MargariMl:
Thanks For asking, in February I found a Lymb node in my right arm that was swollen ... My doctor recommended to be removed it With surgery , I was hoping that Katcyla will keep it suppress it but since then has been growing ...and I want to remove it now but the surgeon can not remove it until shrink it a bit because don't want to remove to much tissue, anyway now i going to receive radiation to shrink it and then surgey.
Other then that everything else is stable For now.
I will continúe with katcyla too.
Thanks
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Yay! I am almost in remission! I am a 16 year Stage 4 de novo with original liver mets, but have been fighting chest node mets for the last 7 years. My Dec scan showed a lot of growth so I was taken off Kadcyla after being on it for 4 years. Went on a Clinical trial of Poziotinib that only lasted 8 days because of severe side effects. I had a lung scan for possible blood clots in Feb that seemed to indicate that the nodes were gone, but my onc said that the scan wasn't accurate for cancer. BUT my recent CT scan showed the same results, so apparently, those 8 days of heck destroyed the nodes. I started Xeloda with Herceptin in March, and that has kept me stable, so I will stay on it. Sure hope this almost-remission turns to permanent!
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Denny123, that is fabulous news! I am so happy for you and soinspired! 16 years is a long time to deal with this beast and all the ups and downs that come with it but boy that sure does make your “almost-remission"all the more wonderful! May it continue for a very long time! Yay!
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Escorpion, how’s your radiation treatment going? Have you been able to do it yet?
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MargaritaML:
Believe or not... I am still waiting ... The radiologist told me to go and see another radiologist that is running a trial for radiation ??? I really don't know what is going on... I have to see the new radiologist next Tuesday and see what is all about, but I am very scared because my Tumor has grow so much ... And my oncologist is holding the Katcyla until I get the radiation.
The doctors are planing to give me radiation to shrink the Tumor and then operate it, but I feel like they are taking too long! Also it seems like ones you give radiation to the armpit the wound it won't be heal asgood because the radiation
Thanks for asking!!
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Escorpion- I did consider radiation a few years ago, but my tumor was too close to my esophagus, which would affect my ability to eat and talk.
So I went with Kadcyla, which was a better choice for me. But rads and surgery might be the better option for you to get rid of the node.
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Hi everyone;
The oncologist team decide to give me high radiacion dosage next Tuesday.
Apparently is a trial, what they want accomplish is to cure the area, so it doesn't came back in the same spot
Is enough radiacion to the Lymb node so I don't have to go for operation after.
The actual standard of care is radiacion and surgery after. With this new aproch only radiaction will be necessary (supposely )
So let's see how goes... I hope it will be a good treatment.
If anybody knows something similar or been in something similar?
Thanks
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escorpion- I didn’t see your whole history about the node radiation, but wanted to respond to your question. I had a metastatic node that was either reactive or not responding to treatment. One treatment center wanted to do nothing, another wanted surgery and radiation (difficult surgery with high potential for complications), and my own center suggested radiation alone before newer research suggested that as a viable option. Had one dose of SBRT with curative intent in April of 2015. The node no longer lit up on the 3 PET scans since I had it. Hope yours ls smooth and effective with little collateral damage!
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CJRT:
The centre where are I going to receive the radiation therapy , told me that usually they don't do this procedure in breast cancers, so I am a bit concern. I am going to received high dosages of Radiation five times....they have been doing this, I guess with other types of cancer .
Thanks for the info, hope everyone is doing well.
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I had my second Kadcyla treatment on Monday. I also received my TMs yesterday and they have risen significantly. I can only hope there hasn’t been enough time on Kadcyla. I have a PET coming June 28.
I’m reading your info on lymph node rads with interest. That is where my new progression showed up 2 months ago. Three places all in the upper left area. No one has mentioned rads.
I have really felt awful since the middle of April. I was on a Gemzar and Hercepton at the time. I have the “ flu like syndrome.” I get very achy and run fevers. My highest fever has been 101.1. We’re trying to figure out if it’s an infection or the new tumor load. I saw a ID doc Friday and he’s running a ton of blood tests. But, he really thinks it’s probably the tumors. Has anyone else experienced this? It has been a rough 2 months. Not feeling very hopeful these days. I have a great medical team.
My signature line doesn’t show it, but I’ve taken almost everything possible the past 4 1/2 years. I’ve been both HER2 positive and negative.
Thanks for listening.
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Hi All-Just throwing a question out to the group b/c I'm trying very hard to keep everything in perspective and positive but I can't seem to get this bad feeling to go away. My most recent bloodwork results (as of yesterday) indicated a *High CEA level of 5.5. When I started Kadcyla back in Feb. 2017, it had dropped from 6.7 to 2.3 and stayed pretty consistent until winter. In the last six months, I've noticed that with each bloodwork result, the CEA has continued to rise each and every time but very, very slowly (but still remained within expected range). I know that other factors can impact the levels but it has been a steady increase (not up and down-just UP). I haven't had a PET scan since last June but maybe it's time to request a new one??? All my other markers and bloodwork remain stable. Just looking for some input.
Thanks, Fran
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Fran-I would ask your onc for his/her opinion.
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Ok so it appears that my current bloodwork is not as much of a "big red flag" that I was thinking was. Apparently, the CEA marker has very high "sensitivity" but low "specificity" (meaning it can detect a lot of different things but not all of it is cancer) and since my other marker is remaining well within limits it does not appear to be a huge alarm. However, the onc. did order a PET/CT scan & bone scan just to be sure (and I haven't had one in a year so it's a good time to do it). While my "unhealthy" thoughts haven't completely subsided, I am a bit less of overwhelmed. Thanks for listening to my concerns & I'll keep you posted. Hope everyone is having a good week. It finally stopped raining here in NJ-wahoo!
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just popping in to say Hello to you ladies~
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I'm glad to have found this group. I was originally diagnosed in June 2016, finished my year of Herceptin one year ago and was diagnosed with Brain Mets at the end of March of this year, so I'm still dealing with the shock. I will have my fourth cycle of Kadcyla this week. So far, I've tolerated it pretty well -- dry mouth and runny nose. My oncologist wants to do six cycles three weeks apart, but when I went to a well-regarded cancer center for a second opinion. They said that if I'm tolerating it well to stay on it 10-12 cycles and follow it with Herceptin. Now I'm reading here that some of you have been on it a lot longer. This may be a naive question, but do people stay on it until it no longer works? Seems like I need to revisit with my oncologist (who is knowledgeable and responsive).
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I was on Kadcyla for almost 4 years, had a brief remission after 2 years. This was for chest node mets. When it quit working, I went onto a clinical trial and now on Xeloda and Herceptin.
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belperron:
Is a good question, I guess depend witch country are you been treat it.
In Canada the Treatment is to get continuos medication until cancer becames resistantto the drug and then continue with the next one, with no stopping .
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Escorpion:
Interesting. I am going to discuss this with my oncologist on Friday. Thanks.
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What kind of side effects have you experienced with Kadcyla? First infusion was today and there's a lot of dizziness tonight....
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I have only had 2 Kadcyla treatments, so limited knowledge. On the first treatment they released it very slowly and observed me for a half hour after. No problems. Second treatment was done normally, with no reaction at that point. Two days after I ran a fever of 101.7 for about four hours. Otherwise, no issues.
Dizziness should definitely be reported to your doctor.
Hope you get an answer.
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So happy to find this thread! My sister in law has lung mets and after being on chemo, Herceptin and Projeta she unfortunately had progression and was taken off all those drugs and put on this Kadryla I have never heard of. Off to catch up on these 40 pages and hoping this new drug works for her!
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Dizzydee, I've been on Kadcyla for close to two years. For me, the side effects have been pretty minor and short-lived. Mostly it's the occasional headache a few days after infusion and a tad bit of neuropathy (which may still be a result of permanent damage from my three courses of Taxol/Abraxane). That said, I don't think it is unusual to have a more pronounced reaction after the first time a new drug is administered. I think Kaption is correct that dizziness, especially if it persists, should be reported to your doc. Also, it's generally not wrong to keep be sure you stay hydrated. My medical center still has me wait a half hour after infusion before I leave as allergic type reactions are not unheard of even among people who have been on the drug for a long time.
Bigpeaches, welcome to this Kadcyla thread. Of course, everybody reacts to drugs differently but I have found it to be a fairly easy protocol. Kadcyla is sometimes referred to as a “super-Herceptin" because it uses the same pathway as Herceptin but delivers a powerful chemo directly to the HER2 over-expressing cells. Well, I'm no scientist so maybe I'm all wrong about how it works 😆 but it seems to work well for many of us and it seems that it is becoming quite commonly prescribed after progression on Herceptin and Perjeta alone. I wish your sister-in-law the best
Dizzydee, please keep us posted on how you are doing!
M.
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Belperron, I was on kadcyla for 16 months until progression. I am now on herceptin and perjetta only.
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Dizzy-I was on Kadcyla for almost 4 years, but with no dizziness. I think you should have your BP checked.
I am now on Xeloda which makes my BP go down to normal so I no longer need my BP meds. I had dizziness when I took the Xeloda pills, and then my BP meds since then my BP was way too low.
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