Who's on Kadcyla/TDM1?
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is there another Onc that is partner with your Onc in the same office that you can get in to see Denny123?
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i know i have mentioned i discuss with my onc future treatments. he said the next would probably be tykerb only. i need to research to see if tykerb has herceptin in it.. being i am a her2+ gal... i want herceptin.... kadcyla is actually herceptin with chemo. so i probably will say Hey doc... i will go on tykerb but can i have herceptin with it. hoping I get much more time with kadcyla tho. just had treatment #24 so been on it for about 15 months. Denny123 wonder if that would be a possibility for you the tykerb herceptin first before tykerb & xeloda ? I see other women on the tykerb herceptin combo. just an fyi.
Hugs.
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DL3, I did whine a lot about waiting so long to see my onc, but I still have a nasty rash and thrush and it has to heal up anyway.
I had been on Herceptin for 11 years. Before Kadcyla, I went back on Gemzar with Herceptin, but it didn't work. So I guess that I have run out of Herceptin options.
I don't think Tykerb has Herceptin in it, like Kadcyla is a super-Herceptin.
Just found out yesterday that I am BRCA2 positive and equivocal BRCA1, after me begging for years for testing. But I never met the criteria for testing.
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Denny...not sure if you've been on any PARP inhibitor trials, but they were recently approved for BRCA mutation breast ca. I'm BRCA + too and this is something in "my back pocket" if current Ibrance/Faslodex combo doesn't work.
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They are checking on the PARP's. But it turned out that the Foundation reported that my TUMOR was BRCA+. They didn't check the whole body for BRCA (germline).
It would have been nice if they had explained that to me initially. But I am still going to try to get the germline checked if insurance will pay for it.
Denise
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im about to start kadcyla.
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Just talked to my chemo nurse and they are going to put me on Olaparib, which is a PARP inhibitor, since my tumor is BRCA2 positive.
But the co-pays are so expensive that they have to seek grants to help to pay for them.
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Good for you! (except for the co-pay part). Please let us know how it goes Denny. I'll be watching with particular interest. My onc is particularly optimistic about theirpotential.
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Sure will keep all of you posted! I am not happy about waiting for 2 more weeks without chemo as my tumors are getting bigger.
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Denny- Good luck on the new meds! Hope the SE's won't be too harsh this go around. I will be sending out lots of prayers and good thoughts your way! Try to keep busy these next two weeks just to keep your mind off of the the stupid tumors. You got this!!!!
Molly- Welcome to our group (although we are sorry you have had to join us). You will find a great deal of support here, as well as, lots of answers to questions as they arise. I can tell you that many of us are finding Kadcyla pretty tolerable and manageable. Personally, I've been on it a year now and I am able to work and live my life while only dealing with mild side effects (especially in comparison to some of the more harsh chemo I've had in the past). Best of all, it's keeping all my "pesky cells" from misbehaving and my last PET scan came back with NED so I'm a big fan of the drug!! Best of luck and don't forget to ask questions and vent here- We are a really great group!!
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Not sure if this helps but I just completed my 32nd cycle of Kadcyla. DX with Her 2 Positive Breast cancer in 2013. Livers mets in 2014. So far, so good.
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I’m new to this group. I’m just starting my second round of Kadcyla, treatment #7. I’m suffering from extreme bloating in my torso, can barely move or eat. My lungs are filled with fluid. I’m normally thin. Now I have a HUGE belly.😰
I’ve had my lungs drained twice, but they filled back up! I’ve tried the pee pills, Lasix 40 mg, don’t really work. Help!!!
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Sarah101, Welcome. I’m concerned that you are experiencing such bloating especially with a history of fluid in the lungs. Those are not side effects that I’ve ever encountered in my year and a half on Kadcyla so I can’t offer specific help but I would urge you to contact your doctor or consider going for urgent care. Being unable to move or eat is not okay. Please keep in touch.
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tlcbkc, it is always nice to hear from someone who is having a good, long run on a treatment. Hope it continues for you! Thanks for checking in.
Fran, is that a recent PET you had? Great news that you are NED! I had two PET scans in 8 months last year that were clear -also showing no signs of active disease. Then in December my PET was all clear but for one bone met that flared back up. It's a site that has flared before so in January we did SBRT to that one met (lumbar vertebrae) and I've continued on with Kadcyla. Our strategy was to keep with what has been working systemically for as long as possible and try to kill off for good the misbehaving met. Won't have another scan for a few months now so just hoping that it worked
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Margarita-I saw your post in my email, asking how I was doing, but don't see it here????
I am still waiting to see if the chemo center can get grants to pay for my co-pays for the Olaparib. Will see my Onc Feb 9.
Sarah101-please see your onc right away-that is serious!
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hi Denny, I went I went back into my message to fix an error and i guess I deleted part of my message?! I find typing on these boards a bit clumsy. Anyway, good to hear from you. I hope that the grants come through. Is there a backup plan?
Sarah101, how you doing
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Margarita-I just got approved for the Lynparza (Olaparib) and my co-pay will only be $3.70 a month!!!
The pharmacist talked to me about it and how to take it. UPS will deliver it on Wed, and I left a message at my chemo center asked if I can start the pills immediately or do I have to wait until I see my onc on Friday first.
Denise
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Denny that is great news, I’m so glad that you will soon be back on treatment and at an affordable price to boot! Now, fingers (and toes!) crossed that it works for you for a good, ong time!
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Thanks and I will keep you posted!
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Saw my onc today, and after waiting for 3 weeks to get approved for the ovarian cancer drug Lynparza (for my BC), he thinks it would be too hard on me.
He suggested Xeloda, and eventually Herceptin again. Since I have been on Herceptin on and off for 11 years, I asked if I can both together and he approved.
Now I have to wait to get approval for Xeloda. But the combo will be lot easier than the Lynparza, which can have some nasty side effects.
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Denny, I’m glad the new combo will be easier on you but really, could he not have figured out that the Lynparza would be too rough several weeks ago? I know you are anxiously waiting to get back on treatment so I hope the necessary approvals come quickly. Thanks for the update. Keep on keeping on
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Still trying to figure out what happened and my nurse who arranged the Foundation testing was upset. But my onc was on vacation for 2 weeks, so I guess he wasn't aware how bad the Poziotonib was. My bloodwork still shows toxicities.
He is on the ovarian cancer board and said the Lynparza is very nasty, and I sure can see that on the Inspire site.
I have known a lot of ladies on Xeloda and looking forward to a possibly "not too bad" chemo. Meanwhile, I will be waiting for the Super Kadcyla to be approved.
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Hi gang-Just feel like "sharing" with people who "get it". Usually I'm quite upbeat and try not to let my current situation dictate my mood. However, yesterday I attended (well for the 10 minutes I could make it through) a memorial service for someone I met during my chemo treatments in 2015 (prior to Kadcyla). She and I ended up working in the same middle school the year after (small world-I know). Anyway, she was finally able to retire last year and decided to stop chemo as of last Sept. b/c it apparently wasn't really working anymore. Anyway, I come to find out that she had been battling this crappy disease on and off for 20 years (God love her!). I can't put it in words but just being at the Memorial service freaked me out and I left and cried all the way home. In all honesty, we didn't know each all that well but we were "connected" through this stupid disease. I'm in such a "funk" today! (I guess it doesn't help that it has been pouring rain all weekend and that I had my Kadcyla treatment on Thursday and always feel "punky" over the weekend). OK... I'm done. Just had to get it out there and hopefully, when I wake up this "dark cloud" will pass over (and the damn rain will stop!!). Thanks for listening.
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Fran 2014:
I really sorry that you lost your friend.
Sometimes I sad and happy at same time, happy because they don't have to go trough all this stress and depression and constant worry to have to live with Cancer.
The ones who still here who are living a grieving for the lost ones and suffering our own straggles every day.
Now she isin peace....happy for ever...
I cheer for her life 🍺!!!
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Hi ladies, been pretty busy havent posted in while thought I better check in.
Welcome to the kadcyla group tlcbkc and Sarah101.
Denny123 sorry to hear about the Lynparza. I read a lot on Xeloda seems to be a drug that is great. has put some in NED. The main SE I hear/read about is HFS. just keep hands and feet moisturized. Hugs.
Fran I am so sorry about the loss of your friend.
I had my CT scan yesterday. so of course now scan anxiety. I dont feel any different at all but last time my lil nodule grew 6 mm. so ... I am Praying for stable. and NO new nodules. see my onc next monday and tues should be kadcyla #25.
Have a Beautiful week ladies.
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Got my approval today for Xeloda, and left a mwssage at my chemo center to see when I can go in since I will also get Herceptin.
Zero co-pay for the Xeloda....guess that it helps that I live on SS.
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Hi All
Hoping everyone is doing well.
I am searching for some advise or
Has anyone has been in a similar situation
I need advice wherever or not remove active Lymb node in my right arm.Litle of my history:
I am diagnosed with....metastatic breast cancer to bones. Triple positive
Currenly taking Katcyla and zometa for bonesRight Lymb node history:
The second time the same Lymb node appears again and then we change of medication( herceptin to Katcyla)due to progression
I first discovered my original cancer diagnosis because of this Lymb node which set me on my cancer journey.(Cancer didn't grow it in my breast metastatic from the beginning)
I recently had a full CT scan and bone scan.
The overall results are encouraging.
There was no progression reported, however I have a small growth/enlarged lymph node in my right arm pit. ( 3.8x 3 cm)My dilemma is that My actual oncologist is suggesting that I should remove the re-occurring enlarged lymph in my RIGHT arm pit.
( he thinks that I AM stable except for the Lymb node) he suggesting remove the Lymb and continue with Katcyla .
I feel like the Lymb node is the one who is telling me that medication work or not or if the cancer is Coming back.
However, I am concerned that if I have it removed the cancer may spread to other parts of my body since It no longer has a place to return to or show (I personal think that maybe the Lymb node is keeping the cancer to go to others partsI did have a second opinion a while ago and the second oncologist told me that I shouldn't removed it because if I do remove it and the cancer came back there where no place that it will show ...
But also afraid that if I keep it it will be came more aggressive.
So, should I remove it...or not... And possibles consequences
Thanks in advance for your answers.
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Denny123.... Yay glad to read your post. Going forward my friend. So you will be n Xeloda and Herceptin. not tykerb and Xeloda, correct?
Escorpian... listen to your Onc and team and always follow your gut/heart. I have total faith in mine. Altho I think I give my Onc a headache sometimes LOL
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DL3.... My onc had originally suggested Xeloda and Tykerb, or maybe he said OR instead of AND. When I asked about it, he said it was a tough combo and they never give those 2 together anymore.
I will get my pills delivered tomorrow and will start on Friday-2 pills in the morning and 2 in the evening...an easier dose....14 days on and 7 days off. Plus Herceptin every week, which is weird. In 16 years, I never had to go in every week, but I guess after my clinical trial from Hell, he is going easy on me.
Escorpian...Since you are already Stage 4, I doubt that the cancer would only go to that lymph node if it comes back. And any recurrence would be seen with your scans. When I just had one lymph node initially in my chest, I could have radiation on it. But since it was so close to my esophagus, I didn't want to chance that. So I decided to go with Kadcyla, and did go into remission.....for a few months.
But it was a good decision to not radiate it since I got more cancerous nodes.....so obviously I needed chemo that would go through my whole system to protect it.
So you could have it removed with surgery, radiation, or see if chemo would reduce it. So, like DL3 says, wait to see what your onc says, and maybe he can discuss the situation with your radiation onc.
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I did Xeloda and Tykerb for over 2 years. I will admit that Xeloda was much easier on the body without the Tykerb.
Good luck Denny
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