Who's on Kadcyla/TDM1?
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Fujiimama, good luck today!
It's nice to know that there is somebody starting this at the same time as I am. Although you will be one week ahead of me. We can help each other through it. Hopefully it will do wonders for both of us!
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Thanks Becs- I made it through. I felt horrible right after. I didn't get any steroids just Kadcyla with my usual lupron and xgeva. Today I actually had enough energy to make pancakes. So overall not too bad yet.0 -
Greetings T-DM1 Ladies.......
I have a question about the restrictions requested for the topic - Who's on Kadcyla/TDM1? (in forum Stage IV and Metastatic Breast Cancer ONLY).
I follow this group but have not posted given the request at the top of the page. I want to respect the request, but wondered if the forum might help other T-DM1 ladies. The ATEMPT clinical trial is the first that opens T-DM1 to Her2 (3+) breast cancer that has not (yet) shown to be metastatic. I'm one of those.
Thanks for giving this some thought. I understand if you wish to keep this closed to non Stage 4.
Maggie
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Maggie
I don't see any reason why you can't post here. If Kadcyla works well enough that it can be used successfully in early stage BC, I would think that it could possibly be a standard of tx.
It wasn't easy for me, but a lot of chemos are much worse. And it did put me into my second remission!
So let me be the first to welcome you!
Denise
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fujiimama,
Why not get steroids before Kadcyla? I also got a pre-med of Kytril. And I got a script for Zofran pills and also bought OTC Pepcid.
Compazine also helps with nausea, but can make you drowsy.
I hope it works for you!
Denise
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Good luck Becs!
Denise
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steroids make me gain ghastly amounts of weight. My MO doesn't give them to per my request unless I absolutely need them (taxotere).0 -
my friend sent this too me. Love the positive imagery.
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Hi Sisters, First time posting, after benefiting from these boards for many years.
I started Kadcyla TDM1 a week ago. Has been a rough week. The mets in my boob area increased in size the day after the infusion, causing serious pain and a scary sized lump. Breast (reconstructed tissue) was swollen and visibly bigger than the other breast. Today the mets under my arm are very painful, even after taking an oxycodone. Good news is the breast swelling is going down and the mets on my clavicle are already much smaller than before I started.
1. Has anyone else on Kadcyla had a palpable and fast increase in size of cancerous lumps right after kadcyla treatment? What happened after that? I am hoping it is a sort of treatment flare that demonstrates a good response.
2. Is anyone else having lymph node pain or other serious pain in soft tissue after starting Kadclyca?
3. Has anyone taken fentanyl patch for pain caused by Kadcyla or other pain? How was it? Doc prescribed it but I am afraid of being so fuzzy I can't function. On other hand, pain is making it hard to function.
Other side effects -- tired. No appetite. Had a fever; not sure if related. Feeling blah but I think it is because the pain is getting me down, and the stress of this progression. So glad to have a community of people who understand what I am going through. Sending love and gratitude to all of you.
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CancerThriver. Looks like we're on the same schedule. I've been extremely tired this week. Only time I feel normal is on oxy. My Mets aren't in places I can feel.Maggie go ahead and post support is support.
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Hi all,
I have been in Kadcyla since December 15, 2014. First cycle I did not recognize much SE's but I also had jetlag since I was coming back from 2 weeks in Europe. The tumors on my chest just melted away. That was such great news. I had cycle #2 3 weeks later. SEs were clearer: headaches, heartburns, dry mouth and fatigue. Especially on day 5. It felt like a hangover (without having had a drink
). Things were better at day 10. I am getting 3rd one today. Ready for same SEs (tums, excedrin handy etc) and probably more neuropathy. Nothing I can do about that. Yes, there are some SEs but at least so far for me, Kadcyla is working. Hang in there. it is worth it. 0 -
Thriver,
Sorry that this is hitting you so hard. 8 months of Kadcyla put my mets into remission. There were behind my sternum, and one is supraclavicular area.
But I didn't have pain in them, so can't help you.
Please keep in touch!
Denise
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Marl,
Great news! I got a script for Zofran and also Compazine but the latter makes me very drowsy. I also take Pepcid.
My chemo center gives ginger lozenges, too.
If you read the above, after 8 months my mets were gone so I am in my second remission.
If your mets are gone, are you going to stop Kadcyla?
My onc wanted to keep me on it, but my SE's were nasty, so I asked for a break. I am now back to Herceptin and continue with Faslodex butt shots.
Denise
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Hi all,
I have been in Kadcyla since December 15, 2014. First cycle I did not recognize much SE's but I also had jetlag since I was coming back from 2 weeks in Europe. The tumors on my chest just melted away. That was such great news. I had cycle #2 3 weeks later. SEs were clearer: headaches, heartburns, dry mouth and fatigue. Especially on day 5. It felt like a hangover (without having had a drink
). Things were better at day 10. I am getting 3rd one today. Ready for same SEs (tums, excedrin handy etc) and probably more neuropathy. Nothing I can do about that. Yes, there are some SEs but at least so far for me, Kadcyla is working. Hang in there. it is worth it. 0 -
Going tomorrow morning for my 3rd T-DM1 infusion. Going with the flow .. whatever may come, will come --->SE-wise. Thankful to be in a clinical trial and have this option... and a place, this place, to better understand what others are experiencing....
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Starting first TDM1 treatment next week at DFCI. Any feedback on what to expect and when? Trying to plan kids, work, vacation, etc and realize everyone reacts differently. I am still sore from the lymph node removal in early January - stiff, sore and itchy.0 -
Maggie, I'm also a Kadcyla non-metser (at least for now - biopsy for chest wall lump in a few days. Argggh). Just finished my seventh cycle out of 14. I'm in the KATHERINE trial, which is open those who had neoadjuvant chemo with Herceptin and didn't have a complete response. Pre-chemo, I had a large tumor and lots of node involvement, so I wanted every little advantage I could get. We'll see with the pending biopsy if it was all for naught...
My second and third infusions were difficult and I experienced nausea, vomiting, general crappy feeling. My AST and ALT climbed steadily for several cycles and I got scary right side discomfort. The liver pain has disappeared and my liver numbers fell back into normal range. So in my case, my body just needed some time to get used to the medicine.
I've been following this thread for several months and I'm encouraged that Kadcyla seems to work for more women than not. There's been some unfavorable press about it and I sometimes doubted doing this trial as opposed to trying to continue the Herceptin/Perjeta combo or doing a different trial (I also had the option of a Halaven trial after surgery).
fujimama, I LOVE that picture! My mom and I call Kadcyla, "Kadzilla."
Denise, as I contemplate a possible recurrence and mets in the near future, stories of long-term mets survival gives me hope. Thank you for sharing.
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I've been in Kadcyla/TDM1 since March of 2013 for a bone met and one metastatic node. As of May of 2013, the only think picked up on scans was the metastatic node, which lingered for a long time but is now less than 8 mm with a low enough uptake value that it is now considered "inflammatory." My tumor markers have been in the normal range since about 3 months after starting Kadcyla. Though my liver enzymes might dance right around the threshold of the high range at times, they are typically normal, and though my platelets occasionally drop, they have never been a cause of clinical concern. I was never given premeds. I cannot recall the specifics of my first infusion, as I had a surgery two days following it. However, since that time, my SE's are fairly predictable. The first night after my infusion I feel drained and a tiny bit woozy. That night, I get a bit chilled. I do have difficulty sleeping for several nights and feel mild increase in inflammation (areas I had surgery, etc.) and experience some fluid retention. The day after the infusion I feel fatigued and sometimes a bit queasy. If I eat through it (like morning sickness), I feel better. I try not to schedule much, if anything, this day. By that evening, the nausea has passed. The following day I might still feel somewhat fatigued but still can manage my normal routine. I frequently get a migraine-like headache for 1-3 days starting around day 4. I have heard weird headaches are a common complaint with Kadcyla, and I even had a brain MRI at a certain point just to be safe. I get help with my 2 young children the day after the infusion, but generally maintain a very normal routine on this drug and an excellent quality of life. For me, it is a dramatic difference from how I fared on traditional chemo the first time around. Wishing all of you newcomers the best of luck with Kadcyla.
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Hi everyone! I have been on Kadcyla for 2 and a half years!! I have been NED since cycle two when it cleared up some pretty severe bone mets! Mild fatigue, nausea, and dry mouth are my main side effects for a few days after treatment but it's a lot easier than traditional chemo! Hoping for great long term results for everyone!
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Next month will be 2 years since I started Kadcyla. My cancer had gotten very aggressive and Kadcyla stopped it cold. My liver mets healed and my bone mets stopped progressing. Unfortunately it doesn't cross the blood/brain barrier and I have many brain mets, but cyberknife has been really successful. SEs have been mostly lack of appetite, nausea, dry mouth, nosebleeds and neuropathy in my fingers. Some days it really gets to me, but most of the time I'm grateful that it's not nearly as bad as some other chemos I've been on and that it's keeping my body STABLE! The lack of appetite has been the most difficult and persistent SE for me, but I'm lucky enough to live in a state where marijuana is legal so I vape marijuana to get an appetite going - it works like a charm.
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Thanks Soooooo much for the encouraging words! Very thankful for this forum and a chance to hear from kadcyla ladies!
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Hi all, Just an update and some more questions. I did the second round of Kadclya TDMI last Friday. My side effects were:
1. Sat 2 am woke up with severe pain in breast where I have a big lump of cancer. Took Fentanyl patch 25. Pain went away in one minute -- doc had said it would take 12 hours. But the patch made me feel woozy so I took it off after a few hours. Yuck, I hate how that patch makes me feel.
2. Slept all day Sat. Felt woozy. Took zofran. Ate breakfast then could eat nothing more. Threw up once. Not sure how much was fentanyl how much was Kadcyla. Pain was totally gone by early Sat afternoon and never came back even after removing patch.
3. Slept sat night. Sunday took zofran every 8 hours. More energy on Sunday. Low appetite.
4. Now it's Monday. No pain, just nausea. Took zofran that helped. VERY sleepy. Hard to get going!
Last cycle I was tired for all three weeks, especially in evenings. Nausea all three weeks but not as bad as first few days. Some headaches but I do not know if that was Kadcyla or something else.
The palpable lumps of cancer in breast, clavicle, and under arm have shrunk. Most of the shrinking was during the second week of first cycle then it stabilized. Hope next week will shrink more. Scan will be after 3 cycles.
For those who have been on it for a while:
1. Do side effects diminish after a few cycles?
2. Do others get headaches from this med?
3. Did it diminish your cancer? If so, for how long?
4. Are you able to work on the Kadcyla? I am working very part time but finding it hard to keep up.
5. What do your doctors say you will try after Kadcyla?
6. How do you deal with lower energy?
HTW, I think someone said was taking Advil or Fioricet. My doc said avoid everything with ibuprofen or acetaminophen because of platelets and liver issues. Please check with your doc about that.
Blessings and gratitude to all,
Thriver
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Thriver, if you read my posts above, I had nausea the whole time, but never threw up. I took Zofran and Pepcid...and ate a lot of carbs to settle my tummy.I was also very tired. I have a store on eBay, so that really helps when I am too tired to do anything, since I don't hve to leave the house.
I didn't get headaches.
I was not told to avoid ibuprofen or acet.
I had Kadcyla for 7 months and I am now in remission. I am taking a break from it and am back on Herceptin until my mets return. My onc said that when the mets return, that I can go back on Kadcyla.
Since I am a 13 year survivor of Stage 4 BC, my nurses thought that my lack of energy was caused by what I have gone through for these last several years.
Good luck!
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Denise,
It has been a while, glad you're still going strong, i hope your remission will last a long long time. I am sure the fact that you were tired during Kadcyla is due to the fact that you have been on meds for a long time , it takes its tall on a person.
I wanted to pm you to tell you that o got my PET results . All tu ors cleraed from both liver and spine and hip. No SUV was found. However TM is 36.5 the normal is 28. But it came down from 50 , to 38.5 , to 36 .
I will continue treatment woth taxol till the six months are over then evaluation they may continue to a total of eight months , if status os still the same they will keep hercept/perjeta an anti hormonal . All remains to bee seen. Hugs and prayers are with you and with all the ladies in this board.
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Wow Woody!What great news!!!!!!!!!! Hope it continues. In the USA, we are todl that 38 and below for tumor markers is normal.
Keep us posted!!!!
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Thank you Denise
) i hope it continues too for the both of us and hopefully we get good news fro the rest of all of us. April , will be my next PET and God's willing it stays the same. 0 -
Hi! I have been on Kadcyla since May2013. It cleared up my liver mets completely! I was doing really well till DX with Brain mets 11/14. Still my PET scans are clear from neck down and continue the Kadcyla.
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okay ladies. I had my second treatment a week ago. I am so tried and my pain levels are skyrocketing. Especially my back top to bottom. I also lost five pounds, just no appetite. And advise? Can my body get used to this?0 -
fujimama, my first three or so infusions were rough...nausea, vomiting, body aches, the whole deal...and then that got better. The next few saw my liver numbers really rise, along with liver pain. I worried I couldn't finish the trial. Then, around infusion six, the liver numbers dropped and now I don't feel anything except a little extra tired the day after an infusion. So your body can get used to it!
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Thanks Baun(Bad at user names). I really needed to hear that. 😊0
