Who's on Kadcyla/TDM1?
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Hi Denny123, so glad to read your getting better. will you have the thoriatic (sp) CT scan only or, do you have both thoriatic/abdomen ct? I now get both when I have my scans ordered. my last scan was after 3 kadcyla's Spoke with Onc today and he said since I am doing well with few SE's we will wait to do next scan rather than after my 6th kadcyla but after my 7th. so ... it was 3 months now 4 months.
Hello wleeky1952, It is nice to meet you and Thank you for your reply!
does your Onc have a CT scan for you every 3 or 4 months?
Unless a pain arises or a symptom that is of concern.. for now... we are keeping my PET at a one time a year.
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Hi there, just wanted to drop in as I am also still on Kadcyla. I also don't post much but do follow this thread and appreciate all the information and gracious support of those who post here. I was on Kadcyla last year for a few months until PET seemed initially to show progression into lung. Switched back to Taxol and then radiology team decided upon further review that probably not lung progression but rather just inflammation (possibly due to earlier radiation). In any case, stayed on Taxol for about four months until next PET showed stability/regression then back on Kadcyla since about September. Doing fairly well on it but have some SEs that others have mentioned: dry nasal passages, dry mouth (SO thirsty at night!) and still a bit of neuropathy likely from the past Taxol. Have next scans in early Jan so fingers crossed that things remain stable. Happy holidays to all
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hi ladies, I have sort of a stupid question...Any concerns about taking tamiflu while on Kadcyla?
I had my first Kadcyla infusion last week, and yesterday my 7 year old nephew tested positive to influenza a and b (after he spent the weekend with me).
My primary care physician ran out of tests but prescribed me tamiflu sincey nephew was even sleeping with me.
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Gramen-definitely check with your oncologist about Tamiflu. Since Kadcyla is relatively new, they have to approve any meds taken with it.
Margarita-Biotene for dry mouth and Ayr saline and Ayr gel for the dry nasal passages.
Good luck !
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Denny123
Hi, happy new year, to all..
Denny i have a question for you , first how are you doing? And I notice you are 15 years with MBC.....( I am very happy, congratulations , you are a inspiration for all of us...) my question is the follow : are you had been with herceptin all this years??? And then Katcyla??? I was reading in your treatment but could find info...,thanks again...
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Escorpion,
It is hard to relate our tx history given the limitations. So I wasn't able to indicate my Herceptin tx.
I was on Herceptin from 2004 to 2014-10 years. Kadcyla is a super-Herceptin, so when I went on Kadcyla I had to quit Herceptin.
I am okay I think. Just got over pneumonia and now I caught a cold again from my grandson. Praying that it doesn't go into pneumonia too.
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Denny123:
I praying for you too... Hope you get better.
I have a silly question , that is bother me
My nurse recommend that I should drink
8 glasses of water a day, I hear somewhere that the water we drink have allot of estrogen in it, because allot of women are taking hormones like anticonceptives and other types of hormones...hormones doesn't get clean after put back in to the drinking water
I am Estrogeno positive and I have miss feeling about taking allot of water, I wonder is because of that I didn't respond for long time to herceptin.
Thanks
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Escorpion- proper hydration is essential! Our drinking water is loaded with countless drugs, both legal and illegal. To stop drinking water is dangerous.
I use a Brita filter for all of my drinking water. Herceptin kept me in remission for 6 years and I drink water all day long.
You will hear tons of theories about what to eat and not to eat-just be careful and don't pay attention to the far-out theories like that.
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Denny123:
Is always good to hear from someone with experience, thanks for helping me.
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Hello ladies.
Just dropping in to say hello. I've been on Kadcyla since June 2016 and had very few SEs. Just started getting slight neuropathy in one hand, but nothing I can't deal with. Last CT & MRI showed progression in my bone, but a complete response in my lung so we have taken the decision to stay on Kadcyla for the time being and see if we can deal with the bone by radiotherapy and bone strengtheners. Fingers crossed because I have a very good quality of life on this drug.
Denny - I hope the results from the CT are good and that the lung thing is nothing to worry about.
Wishing everyone all the best of health and happiness for 2017.
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Hi, I had my second treatment Jan. 4. I have the runny nose and watery eyes but had that with the THP. I have not had the dry mouth or upset stomach so far. I do have a fair amount of pain. I am one that doesn't want to take anything more then I have to but I have had to take a pain pill some so I can stay up. The legs, back and shoulder are the worst. Some days it is not too bad. But the fatigue is adding up. I assume it is also just getting use to the medicine. But it is better then being sick for a week and a half on the other stuff. Will be nice to find out if it is working. I do need to add a protein drink. Anyone who uses them, is one better then the other? Guess I will watch it snow for a while. I am in Iowa and we had ice this morning and now snow and wind. Good I don't have to go anywhere. Have a good day. Will talk later.
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Welcome Pasque. Had my third treatment yesterday and anticipating PET scan after fourth treatment in mid February.
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cath3rine I havne't gotten the CT results yet, but how great to have a 5 minute scan as compared to the 3 hour PET.
Pasque-I get a Decadron IV with my tx for pain and nausea. Make sure that you get that, and tell your nurses about the pain.
Also-make sure it is okay to take a protein drink with your chemo. I have always been told to avoid ANY protein drinks, since they aren't safe. There is nothing we can do about the fatigue since our bodies are fighting the cancer.
Believe me, I have a ton of fatigue after 15 years of chemo and no food or drink will help it. Mention that to your nurses too, to make sure your blood levels are all okay.
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Thanks Denny, I was told I didn't need the Decadron with Kadcyla. But will bring it up next time. I hadn't heard that about the protein drinks. I have never found one I like to drink so have avoided them. My protein is just a hair low so not anything serious. So far the protein is the only number a bit low. Sure is nice to have someone who has been through it to talk too. I wish I could tell if my hair is coming back. Doesn't seem like it yet. But hair doesn't mean much anymore. Good Luck to everyone.
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Denny, thanks for the biotene tip a few weeks back. I've been using it and it seems to help with the dryness though I still drink a ton of water at night too. Also been using the Ayr for sinuses and it also helps. I had a terrible cold during the early part of this month but seem to be mostly over it now so back to the "usual" dry nose.
Also, I just wanted to share that my PET scan results from last week showed no metabolic activity anywhere! This after nearly two years of various treatments - Taxol HP, just Herceptin/Perjeta (progression), Kadcyla (suspected progression), Taxol HP again, back to Kadcyla for past couple of months. We can get there! I hope it will stay that way for a good long time because aside from a few pesky SEs, I find Kadcyla to be quite manageable. At the same time, my heart functioning (efficiency) has degraded a bit and blood pressure has been high so now also on Lisinopril and going for regular echos. Sigh, it's always something but still I'm grateful
Pasque, my hair is growing back but it seems to be at a snail's pace fortunately I live in a cold climate so I can just wear a hat everywhere I go. No bad hair days anymore - just hair days!
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Pasque-that is weird since at my chemo center, everyone on Kadcyla gets Decadron. And they also offer a Tylenol, but I turn that down.
I didn't have any hair loss or thinning at all with it, so you should have hair soon!
Yay Margarita!!! I went into remission 2 years ago, and took a break from Kadcyla for 9 months. I really didn't want to go that long, and shouldn't have, since it came back with 5 additional nodes.
So you may want to stay on it. I know that if I am ever blessed with remission again, that I will never stop Kadcyla. Or if my insurance requires me to, only a 3 month break.
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MargaritaML :
Thanks for sharing the good news, I so glad, hope we all have good news all year long.
Have a great day everyone
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Denny, thanks for the information about your experience with a Kadcyla break. Such a bummer that it came back - hope it is at least stable now. Was it your insurance that required a break? Or was there another reason for it? In my case, no one is talking about going off of it at this point and I'd be scared to anyway but with heart issues and (what is currently fairly mild) neuropathy, I imagine toxicity could be an issue someday. I'd never thought about insurance requiring it.
Btw, I don't get Decadron either. I just get compazine with my infusion. I'm going to ask about Decadron next time - I'm just curious why everyone at your center is given it but neither I or Pasque are on it. It's so interesting to learn how different medical centers approach things.
Cheers!
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Thanks Escorpion! I also hope we all have good news all year!
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Very interesting! I wondered about this too. I don't get any meds for the Kadcyla infusion, and no monitoring afterwards just disconnect my port and they tell me I'm good to go.
Best wishes to all!
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Margarita-my onc asked me if I wanted to take a break and I agreed. But I didn't know that he wanted me to go 9 months without Kadcyla.
I did go back on Herceptin. I guess I should have spoken up about the long break.
When the cancer came back and worse, I talked to a lot of my nurses, and most of them did say that sometimes the body needs to take a break. I guess....maybe....oh well.
Pre-meds--I get Aloxi and Emend anti-nausea, Cycortef (sp??) for allergies, and Decadron.
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Hello everyone!!!
I had my last infucion January 5 , Katcyla plus Zometa, I do not want to Saund like cry baby, but this Zometa is killing me....
I really don't know yet if I getting any benefit from it.... Y have a numb in my right arm that is almost permanent ...by now I suppostly feel better but not.
I have more pains than before.... And I know is the zometa , when I take only Katcyla y feel great after.... I think Katcyla is really working for me , but when I get zometa I feel very bad and my body is really taking a tow....
The doctor is giving me other option PAMIDRONATE,but is taking by 3 hour infucion....
Also I star to feel a little pain like a niddle in my liver..... ( or under my right rib)
I thinking that so many medication are actually doing more harm than good.....
Please that any one had anything to share with me regard this matter???
I know someone of you told me that zometa help improving the bone in case of fracture....I hope that thedoctor knows that this two medication can work togueter
Thanks for your reply!!!
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hi Escorpion. Sorry to hear that you are struggling with pain and discomfort. I also get Zometa with Kadcyla - usually once every 4 months or so. The two medications are intended to work together for bone mets. I have also experienced some aches and pains from Zometa but for me, it usually only lasts for a few days. Have you told your oncologist about the pains you are having? I guess you have since he or she has offered an alternative. I am not familiar with Pamidronate but I would not avoid an alternative just because of the 3 hour infusion time. I know it's no fun to spend so much time in the infusion chair but if you will suffer less in the days following, it may be worth it. I take an iPad and headphones and watch movies during infusions. It helps pass the time and it's peaceful to tune out the surroundings. I believe there is also a Zometa thread on these boards somewhere. Perhaps others there have had similar experience to yours. Hang in there!
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Thanks margaritaML, I really don't know why my doctor is giving me zometa every other infucion , that means every 6 weeks
I feel like is too much, he alredy lower the dosage, but still allot of pain, I read somewhere in this site that giving Zometa less frecuently will give the same results as giving every six weeks.( like every four months or something like that)
I will ask him for Xgeva too, to see what he Thinks, but I have to find out if covered here in Ontario.
Thanks again!!!
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Hi, I have only had 2 treatments with Kadcyla but did get Xgeva with this one. I had some pain which is the worst side effect so far. But today I was Ok. Didn't take any pain pills. Muscles are a bit sore in the legs but had that before. I go the 25th for the next treatment but He usually puts off the Xgeva til the next treatment because it is only 3 weeks. He says it has a hold over. So will see if that is what is causing the pain. I get a bit tired of it but if It keeps me alive, I can deal with it.
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During my first year of treatment, I also had Zometa more frequently. I can't now recall exactly how often - maybe every 6 weeks? but then after one year, it was reduced to every 3 or 4 months just depending on what else is going on. For example, last year I needed dental work so I had a period of 6 months without getting it. It was a nice little break while it lasted - excepting for the dental work. Lol
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Anyone has check this web: Army of women's , by Susan love.
The Heath of women Study.
There are some surveys there, to help to find a cure.
Anyone who is interest .
Have a great day everyone!!!
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margaritaML , pasque,
Thanks for the info, I notice I get very depress when I am in so much pain.
It's almost two weeks that I have muscle pain..., anyway...if the medication is working is worth it , I just worry that I have to go through all this and the medication is not working ....
Thanks for keeping me up!!!'
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Pasque - I receive Decadron with each Kadcyla treatment.
Also in regards to the protein drink, you can do something simpler and less expensive. It's something dietitians recommend for cancer patients so I'm sure it's safe.
Add nonfat milk powder to regular milk either 2% or whole milk depending on what you want. Mix it up well and refrigerate. If you add 1/3 cup of milk powder to a cup of milk, you will double the protein content of the milk, giving you 16 grams of protein per cup.
This was something that I saw recommended when I was on Taxotere. It was really helpful when my appetite wasn't so great.
I suspect you could make an eggnog recipe without the alcohol and achieve the same thing.
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Denny123,
I see that u were stage 4 right out of the gate, and then surgery, I thought they didn't do surgery for stage 4, could you please explain
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