Who's on Kadcyla/TDM1?
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Ojjtocs, wishing you great results with Kadcyla.
Is so hard to tell about side effects. Some people have a really hard time, while others feel great. Then, with time some issues may come up, low platelets, elevated liver enzymes, etc.
Same for the day of treatment. Some people get premeds, are monitored for 30 mins after infusion, and stay on steroids for a few days after. While others, only get their infusion, no meds at all, no monitoring (like me).
I find this thread and the ladies posting very helpful, hope you do to...
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Hi ojttocs ! actually the SE's my onc said I could have .. I have had VERY few. my main SE is the runny nose for few days after kadcyla and then the fatigue for about 2-3 days. as of now.... round #11 I am doing great ... and stable.
my Onc keeps close tabs on my labs.... as i know all the oncs do with kadcyla.
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Hi, It is hard to say. I had runny nose and watery eyes. It has been different most of the time. Sometimes a lot of pain. Feel great sitting down and think you could get up and do anything, then stand up and go "Oh guess not." It is better then the others I have been on. Constipation is something I get the first few days afterward. Started taking fiber supplements. Bean soup does wonders. Hope it all goes well with you, it is a better treatment.
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Oh Denny! Sorry to hear about your fall and broken bones. Hope you are on the mend! Glad the rest of you seem to be doing well. I just wanted to check in to say all is fine with me. I'm feeling pretty good these days. Have minimal side effects - same as others have mentioned: occasional runny nose, a little fatigue, sometimes constipation and a bit of neuropathy though it's much better than it was initially. Also, I have consistently elevated liver enzymes but my MO doesn't seem to be worried. I also find that the days that I have Zometa along with Kadcyla are the worst. Usually more significant fatigue and then headaches but they usually only last a couple of days. Overall, living a pretty normal life. Scans next month. 😊
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Oh Denny-I'm so very sorry to hear about your accident! I do hope that you are on the mend very soon!
Things with me having me going well and I'm beginning to wrap up the end this school year (I'm hopeful that I won't be as fatigued once I don't have to wake at 5:30 am and work the whole day). After quite a fight with my insurance company, I've finally been authorized to complete my first PET scan since starting Kadcyla in January. I'm really hoping for the best!!
Ojttocs-Hello! I know everyone is different (and responds differently) but so far so good for me! Very manageable SE's-mostly have to adjust to feeling fatigued (particularly the week following treatment) and the runny nose (but it has become less frequent during the last month). I do wish you well!
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Hi Ladies! I'm trying to process the results for second scan since starting Kadcyla. The first scan after 3 treatments appeared to be a slam dunk taking care of my liver mets, read:
IMPRESSION: PET-CT from the skull base to mid thighs demonstrates:
1. Interval complete metabolic response with complete resolution of prior noted hepatic metastases.
2. Mildly FDG avid nonenlarged right axillary lymph node, most consistent with sequela of FDG extravasation. Attention on follow-up imaging.
Then now, after 7 treatments results read:
Minimal interval increase in size and FDG activity of right axillary lymphadenopathy, concerning for metastatic disease. Non specific hilar soft tissue fullness. Otherwise no new or enlarging hypermetabolic lesion.
So, what's up with this lymph node? Kadcyla took care of large, 4 and 3 cm liver mets but this pesky lymph node is still active. My Dr proposed to just watch it, but darn, every time we do that things explode. Like when I was told I was stage 2 that the 8mm spot in my liver probably wasn't cancer...and then wrong! Is there anything you can suggest, I wish we could do a biopsy instead of waiting....
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Gramen:
Is very difficult to give a opinion, in my case it took almost 10 -11 infucions to normalized things , I will say I feel like normal human been now... I not even talking Tylenol.
I feel like your doctor is giving a chance to make the medication to attack slowly and precise, because this what this drug do, That's way we have to be always in treatment (he is also testing because as you know everyone is different)
Anyway I can not tell you what to do, but in my personal option if I was you, if the Lymb Mets are growing in the next 2-3 months maybe you should to check it up.... But again maybe you should to discuss with you doctor.. Like I said in my case took this long to get results...
Also I think If is keeping the others under control it means is working until certing extend..
Regards!!
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thanks escorpion! Is so hard to be patient :-)
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I had been on kadcyla since January 2016. I had three bone scans which showed stable. Liver enzymes went up again. I had asked for a drug holiday to spend a couple of months in Florida for the winter. MO decided to go on and grant my wish, stopped meds so liver could heal while I was stable. Here I am today still stable (extensive bone mets) no meds and feeling great. Ca 27.29 now down to
.5. I failed herceptin and perjeta, Kadcyla has worked for me so far. I had very minimal SE fatigue low platelets >bilirubin 0 -
Gramen
I just wanted to chime in to give you my experience. I was on TDM1 for 10 months and have had slow growth in my Axilary lymph node since month 4 (so basically very soon after my treatment started). Rather than stop treatment, we decided to keep an eye on it as the mets in my lung and other lymph nodes were completely resolved. I've now stopped TDM1 as there are some other small mets to the other lung and bone, but I did manage to get 10 months out of it.
I think a differential response is quite common and my oncologist suggested that if that was the only met that was troublesome, the best approach would have been to continue TDM1 and have the node removed.
Once you get your next scan, you might want to consider a second opinion too. I got two second opinions before making the decision to move on to my next treatment. I hope this helps.
Catherine
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Catherine,
Thank you for sharing your experience. You are correct, I need to pursue a second opinion!
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Catherine,
Thanks For sharing your experience with us, all this details help us allot.
And is true what you said, always check for second option I done that and had help me allot.
Gramen, keep us inform....
Have a great weekend everyone !!!!
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Hi Ladies,
I just had my first infusion of kadcyla 2 weeks ago. I didn't feel any side effects on the first 3 days but on day 4 I started to have headache and vomiting. Wasn't feeling good until day 5 and started to have nose bleeding where I had to call the Dr. and they had me under observation until day 8(they suggested to have blood infusion and am glad I refused). Day 9 until now am feeling great. Am happy I found this group so I can read some experiences from the brave people. Goodluck to us
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angel5806:
Welcome to the group, I glad you are feeling better now.... I also had a hard time too when I first started the medication....
Keep us inform...best wishes.
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Hi Angel ... welcome to this Kadcyla group
Ladies, I had my 12th Kadcyla today. oh and my AST numbers went down.... I am drinking more water ... at least trying too ... probably not why they went down but I am going to keep adding more water daily and see what happens next time. My Onc is not worried per say as all my other lab numbers are very good.
Have a wonderful week.
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hope Denny is doing well. Seems odd not to have her on. My markers went up again but all my other numbers are great. I get a pet scan on the 1st and then see Dr. on the 7th. This time after my treatment I did hurt more, which in the past seemed to mean it was working. We are finally getting some sun so that helps. hang in there Denny and hope all is going good.
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Finally got home 2 days ago after spending 5 1/2 weeks in a hospital and nursing home.
I live alone but struggling to do what I can.
I broke my right femur and left shoulder after tripping on an unmarked step in a restaurant.
The nursing home had lousy wifi so I couldn't keep in touch.
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Denny! Is good to hear from you. Sending good thoughts and vibes your way!!!
I can only imagine dealing with a broken femur and shoulder on top of everything else...
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Denny123, happy to hear from you, hoping everything gets better.
I have a question for the ladies who are taking Katcyla and Zometa.
Every time I take zometa , after the 10 day I been notice that I have a terrible tooth pain, yesterday was very bad, I though that it was a root canal I have, but is some of my molars, I am planing to talk with my doctor about it, I wounded if is side effect of zometa or is a bad tooth , I don't want to do annesesary teeth work because I really don't thrust some of the dentist .
Does anybody has experience the same issue or have any advice with personal experience , thanks in advance .
Wishing everyone good health... God bless.
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Hi, after my last treatment I got a numbness on one side of my mouth. It has been 2 weeks and is going away some. Just something new for me.
Hope Denny is doing ok. She is there for us so much. My thoughts and prayers are with you.
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Hello Escorpion, what is the Zometa for when I receive my Kadcyla the only thing I receive is that.... kadcyla.
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I got home a week ago on Wed. On Sunday I tripped on my walker and fell against my fridge, hitting my broken shoulder.
I didn't rebreak it, TG. Was carrying a juice glass to my sink and smashed it and cut up my hand. So far, my lymphedema didn't get worse from the cuts.
Will have chemo tomorrow.
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Oh Denny-I'm so very sorry to hear about everything you have been going through! You will be in my prayers and I truly hope you are on the mend very soon!!!
I wanted to share some very positive news that has had me smiling all day (even during my treatment-lol). Last week I just had my first PET scan since beginning Kadcyla in Jan. My new scan indicates that currently "there is no evidence of disease" at all. Wahoo!!! I am so thrilled that this medicine appears to be doing its job so well!! Hoping you are all doing well!
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YAY Fran! Keep up the good work! I pray that NED lasts forever for you.
Denise
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Fran 2014: Very food news, very happy for you... Hope Katcyla keep us all with good results for long time....
Denny: sorry about your fall, TG any serious...
Sending everyone good vibes.... Have a great weekend!!!
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I was on Kadcyla for 3 months.. given that I have a fast growing cancer, scans showed continued progression and hence we changed to Gemzar + Carboplatin.
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Denny,
Do you have any family in the area? I think you could use a bit of help. And a few ice packs, LOL. Seriously, I'm sorry to hear how you're having all these other issues. Take care of yourself as your good experiences have been so helpful to so many ladies here.
I wanted to post this article from Cure about soy (which I tend to like, in tofu and edemame): http://www.curetoday.com/community/amanda-bontempo...
Angel, your body should acclimate over time. Mine did, and I have very few SE's.
Escorpion, I don't follow the Zometa in conjunction with Kadcyla. I am treated at Fox Chase and that's not their protocol.
Where is everyone being treated, just out of curiosity?
Best to everyone.
Miriam
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Hi, everyone .... Hopping that everyone is doing well...
Regarding with my question about my tooth pain, I spoke with my nurse and she told me that is one of the sideeffect of zometa and there is nothing I can do about it( the pain just last for only two days)
Zometa is for the bone.
About the Soy, is very confusing some sites sugguest that is good and other don't , my Doctor in particular told me that I shouldn't drink soy milk because I am ER+,
Have a great day everyone!!!
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Miriam,
Yes, I do have a nurse daughter who has been enormous help for me. Couldn't do it without her.
Thanks for posting the soy article, but I have been advised against it for so long, that I won't touch the stuff-especially yucky tofu.
I get my treatment at the Arnold Palmer Pavilion in Greensburg, PA.
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Yeah, I know the soy is controversial.
Denny, do you know much about Dr. Gauri Kiefer at UPMC Hillman? Just wondering as her surname is the same as my maiden name. There were a lot of Kiefers in the Pittsburgh area, but she did her studies in India and I'm wondering if she married once at UPMC. Sorry, it just came into my head.
I can't eat plain tofu, but Korean braised is delicious.
Escorpion, that makes more sense now. Zometa is a bone cancer therapy, I guess.
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