Who's on Kadcyla/TDM1?
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Yes Stage 3 treatment. I know somewhat unusual, but an odd case (multi-expression TN before surgery and HER2 after) with really no standard of care. So far all, including insurance, have been pretty supportive in trying different things, with our focus now on trying to knock out HER2+ since it went untreated through all the neoadjuvant period(we were treating TN). We've elected to be as aggressive as we can and go from there.
I'm continually amazed by you stage IV ladies, your stamina, attitude and support are incredible. Will let y'all know how things progress, and maybe Kadcyla becomes more common for earlier stage.
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Any ladies on here experience constant runny nose? Like at least one nostril at a time..lol. Sounds odd. Not sure if its allergies or chemo for they both started around the same time. I read up on side effects and saw bloody noses but not runny. Never had a full on nose bleed but have had some blood when I would blow. Im going for my 5th cycle next Tuesday so far pretty tolerable I feel bloated and queasy the night of and about 1-2 days after treatment. So much better feeling then my first go around with the harsh chemos, the losing the hair, constant nausea for like a week, and the Neulasta injections. Good luck and so many prayers to who are living or caring for someone with this terrible disease.
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Erkipper, I had a short run on TDM-1 (5 cycles) and did indeed have a runny nose. It is due to the Herceptin. I´ve been on Herceptin on and off, and each time I start all over I get a runny nose, which lasts for about 5 months. After my second cycle of TDM-1 I started to have a little bloody nose, too (aka rupture of small blood vessels). I started Herceptin again about two months ago (every three weeks), and apart from the runny nose I have a bloody nose the first week after infusion. I hope you get a very long run on TDM-1 - it is a really doable drug compared to so many of the other treatments that we expose ourselves to.
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Erkipper, I have been on Herceptin for 12 years, and don't have much of a runny nose. I was on Kadcyla for 4 years, and that is when I DID have a runny nose.
Be careful when blowing your nose. For my first year on Kadcyla, I just had a little blood, but then it developed into daily nose bleeds....sometimes severe.
For the bleeds, put some Afrin on a Q-Tip and swab the insides of your nostrils. That usually stops it. If not, spray the Afrin into the nostrils to constrict the blood vessels.
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denny123:
I want to ask You if You every got metástasis to The brain?
When and for how long you have it.
Sorry to ask, I just recently got the news that I have it 1.3 cm lesion in my right lobe and I devastated .... I very depress now , and I feel like the the chronic decease don't apply to me anymore...
I really need help.....
If anybody can give me any advice I will appreciate
Thanks
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Topacio...So sorry! And I don't have brain mets as far as I know. But Kadcyla does a good job on them. I have read a lot of posts about ladies with brain mets and a lot of chemos work on them, including Tykerb.
My mets were first in my liver, and then I had a recurrence in my chest nodes.
Prayers for you!
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Hello I just had my 1st infusion of Kadcyla last Friday. No problems with infusion so I guess next dose will be 30 minutes? I had terrible nausea in the middle of the night of day 2 and ended up dry heaving. For me the nausea is similar to Taxol/Herceptin treatment. I am more tired more on this than Herceptin only but its do able. I want to thank all of you for your posts... made for interesting reading and educational too. Today o had PET scan and Echo as Echo done on 4/1 showed mitral valve prolapse that wasn't there before neo-adjuant taxol/Herceptin. I'm glad my MO is being cautious because at 56 I still have a lot of living to do!
BTW nice to meet you all
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Nanette-When I started on Kadcyla, I got a pre-med of Kytril, but it didn't work too well. So then I got Emend and Aloxi pre-meds, which worked a lot better.
After my treatment, I could take Compazine pills for the first week, and then was able to take Zofran pills. Zofran has some of the same properties as either Emend or Aloxi, so I had to delay taking Zofran for a week.
I found the best medicine to be OTC Emetrol which is a liquid.
Good luck!
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thanks Denny I'll switch to the compazine as zofran wasn't too much in the relief dept
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Hi Nanette,
Yes, next dose should be 30 minutes.
My 9th infusion is planned for tomorrow; I was extremely tired after the first couple of infusions, but now I am much less tired. Drinking a lot of fluid and lots of small snacks the day of infusion and the following 2 - 3 days has helped me with slight nausea/gastrointestinal side effects.
I wish you success with this treatment.
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I looked at my schedule at my treatment center after getting a computer call... seems they have me getting treatment every week. Is this the protocol for "other than metastatic disease"? MO put me on kadcyla because I had residual cancer in my Sentinel nodes )but not ancillary nodes) after neo-adjuant chemo.
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I found that eating carbs was the best for me to help with the nausea. Not a good diet, by any means. But whatever works....
Mashed potatoes & buttered noodles were my friend.
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Hi, Denny123
How are You doing in xeloda, are you having side effects?
I start having black dots in the palm of my hands and feed, I wonder if this will get worst or will desapear with time.
Thanks
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Topacio - I am on a low dose of Xeloda at 2,000 mg a day. I have freckles on my hands and feet, but they don't bother me as much as the raw areas on my feet and cracks in the creases of my fingers.
My onc just sent a script for urea 40% ointment for my feet, and I am on a Xeloda break for a few weeks.
I have been on chemo for 17 years, so I guess that I am more sensitive to treatments now???
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Well, this thread has been very quiet so I hope that it is a sign that you all are doing well and busy living your lives!
I just wanted to let you know that after 40+ Kadcyla infusions (nearly three years!), my run on the drug has come to an end. I've had small progressions a few times while on Kadcyla that were treated with SBRT so I could continue on this drug that has treated me fairly well as side effects go and has kept my mets in pretty good check. But, this time it's been only three months since last SBRT and now another new met has popped up. So, time to change things up.
I just had my first Keytruda infusion - it was administered along with Herceptin so we'll see. So far, I feel great but it's very early times yet! I'll probably continue to lurk here from time to time just to see how you are... Am especially thinking of our old friend, Escorpion, as we joined the thread about the same time but I haven't seen anything from her in a long time.
Wishing you all well!
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Good luck! I keep checking here to give advice about my Kadcyla experiences.
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Thanks Denny123! Hope you're doing well
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Margarita-I am on Xeloda and Herceptin and dealing with sore hands and feet. Always something...
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Margarita, I wish you success with the new treatment.
I have had 11 Kadcyla infusions with fairly mild side effects, hoping for a long run like you and Denny.
Best wishes to all.
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Meja glad to here you've done so well. I will have 37 total treatments and my SE's aren't too bad.
Hope everyone is having a good weekend
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I have been on Kadcyla since Jan 2018 after a met to my left clavicle (removed. Previously, I had 10 years of Herceptin. I’ve also been on Faslidex for quite a few years. In addition, I receive Xgeva every 3 months. I am sooo tired most of the time, but I push through and try to have a “normal” life. I’ve been battling BC since 2000 due to four diagnoses.
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BAWink.... I really admire your patience dealing with this for so long. May you be cancer free soon.
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Hello All,
I just started TDM1 less than a week ago. It was recommended to me because I still had a decent sized tumor removed along with 5 positive axillary lymph nodes after chemo (Taxotere, Carboplaten, Herceptin, Perjeta). I noticed the tumor feeling slightly firm again after being on only Herceptin and Perjeta, as It got closer to my surgery date. I haven't noticed any side effects yet, but will post again if I do. I am on Zoladex (to keep estrogen suppressed- I am 38) and TDM1 currently.
Take care
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hi and welcome bc201.... I think you'll "like" this treatment. I've been on it for a fewer months now and the side effects aren't too bad at all.
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for people who get no premeds.. I start kadcyla on aug 5, and have requested to not have the steroids. I did well on tchp (now getting kadcyla since I didn't have a pcr, but close). what kind of side effects should I expect? I had tchp, then surgery, then radiation. they started me on Herceptin only, now I am switching to kadcyla (I only had three rounds of Herceptin only, and I requested a meeting with my MO to switch me to kadcyla bc the side effects were less severe than a year of nerlynx, which was my original treatment plan)so im hoping by skipping steroids im not shooting myself in the foot to start!
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Hi aschrock11,
I haven’t needed premeds. Drink plenty of fluids, especially the first few days. Kadcyla can upset the stomach and result in gastrointestinal side effects, e.g. constipation . I also experienced some fatigue, especially after the first three infusions, now it is not so bad (I’ve had 13).
I hope you don’t experience any really bad side effects; for me it is a fairly easy treatment.
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Hi aschrock11, I’m no longer on Kadcyla as I had progression but I did previously have nearly 50 infusions! Overall, I found Kadcyla to be a very tolerable treatment. I was initially given compazine (sp?) for nausea but I didn’t like how grouchy and irritable I felt after infusions so I dropped the compazine and actually never did experience nausea. I did drink lots of water before, during and just after my infusions. And, I made sure my diet included probiotics. My advice would be to try it without the premeds first and add them in only if needed to counter specific side effects or problems, if any arise. Good luck!
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MargaritaMS
What are you taking now since the Kadcyla is no longer working? I will have my 10th infusion tomorrow. So far no progression from the neck down. I do have brain mets that I'm dealing with. Wish I could take something for both.
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Hi Erkipper. I'm currently on a combination of Herceptin & Keytruda. After progression I was offered either a combination of Tykerb & Xeloda or the non-standard H/Keytruda combo. Keytruda was suggested because I have a high tumor mutational burden and a low overall tumor burden so it seemed a good time to give it a go. I figured that the Tykerb/Xeloda combo would still be there down the road if needed. I'm fairly heavily pre-treated having had Taxol, Abraxane, HP and many years ago in my early stage treatment, I had A/C. I've only had two infusions on the new combo but so far so good.
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Margarita MS,
Hi, how are You?
I using a new name topacio stead of Escorpion because I forgot my password.
Thanks for asking about me, I am in other blog , Iam currently in the her2climb trial, taking Xeloda, Herceptin and placebo.
Well to make the story short, I was always worry about getting brain mets, and since I got my diagnosis I been asking my doctor to do MRI, he keep telling me that only he will do if I have any side effects, and by a miracle one other Doctor order MRI, and they found a 5mm Tumor , but guess what, they never inform me, ...that was last year...... So I enter this new trail this year, the her2climb because progresion in my arm and part of the study you have to do MRI, to check for brain mets, and I found out that I have a Tumor since last year that I wasn't aware about it, lucky didn't grow too much.... So they did the gamma knife radiation and now I am ok.
So my oncologist have the results from last year MRI, and didn't inform me....I was very upset, because I was thinking that everything was ok.... I always checking all my results of every test....
Luckily didn't grow much in a year.... And thank God everything is ok now.... You can not trust in nobody .... Regarding your health....
Sending good vibes to all....
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