Who's on Kadcyla/TDM1?
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Denny, My MO suggested adding Arimidex to the Faslodex but when TMs and scans showed progression that idea was tabled. My treatments are in Pittsburgh...noticed that you are in PA. Coincidentally could we be talking to the same MO re Faslodex? Would be funny.. Prayers for your newest success with Rx plan. Peggy
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Trisha, I just saw your post and I also will be a newbe on Kadcyla in a few weeks. I was dxd stage 4 two years ago (MBC ..mets to the lung.). Since then it has been Herceptin with Faslodex. I am spoiled in that no se...yay! Now I need to get agrip on a new start with Kadcyla also with Faslodex. How has your new txt plan worked out for you? My best wishes for every success with that. Peggy
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Peggy- I live in Greensburg, 35 miles east of Pgh. Got my surgeries at Magee. When my case gets difficult, my onc, Dr. Evans, discusses it with Dr. Brufsky.
I get my chemo and now my scans at the Arnold Palmer Pavillion. How neat that you live in my area!!!
Denise
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Denise, Dr Brufsky is my primary MO..I see hin about once every 2 mo. aLso had surgeries at Magee. My labs and imaging and tx are all done with Dr Spielvogel UPMC Hermitage. He is great....neat oincidence Denice. I really want to start the Kadcyla @Magee and see how it goes....nurses are very familiar with it there......right now when I take Herceptin...it follows Benadryl....lprior respiratory issues there. I truly hope your current tx turns around and squelches any progression. Btw Dr Brufsky added Arimidex back onto the Faslodex tx He does seem to see success with that. We have some great docs who are connected to the latest trial results. I live in New Wilmington......going to get out and enjoy the beautiful day! Peggy
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Good luck Peggy! Let us know how the Kadcyla works for you. When my remission was over, I did have Aromasin for a few months and that didn't help with the tumors behind my sternum.
So I am thinking that is why my onc didn't prescribe Arimidex for me.
Denise
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Hi all. Denny how is the abd issue going? Have you found a good remedy? I have been experiencing significant heart burn and vomiting. I also got ascites over the weekend. This morning, I vomited a lot. Felt like I had a garden hose running out of my mouth! I am ten days out of 1st treatment. The good thing is I could fit in pants today! Now I only look 5 mo pregnant. I am going to try pepcid tonight and see if that helps. It really does not seem to matter what I eat (don't eat spicy foods anyway) and I will try the papain tabs this weekend. My TM's have gone up to 2058 and the liver enzymes are ASP 957, AST 268 ALT 478. I know this could be the tumor lysing can elevate them, so not panicking just yet. I have weekly draws.
Have a great weekend!
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Moni,
Please call your onc! You should not be allowed to do so much vomiting!!!! I am worried about you.
I got Emend and Aloxi today and actually feel okay tonight....so far. I am eating buttered noodles, and that seems to help. My diet for the next week will be mostly carbs, toast, scrambled eggs, noodles, etc. Everything bland.
I can take Compazine with these 2 anti-nausea meds. In a few days I can take Zofran.
Please keep us posted!
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Moni, I agree with Denise...call onc asap. You need to be seen and hydrated. Your system is in a path of shut down with the extensive loss of fluid shown.. Before addressing the vomiting the hospital needs to prioritize your needs and work to stabilize the situation. Then steps can be taken to correct the nausea after some fluid requirement is restored. If one of your primary oncology team is not available then a trip to the hospital is in order. Once there lab work and quick assessment will be done and you will be on your way to replacing fluid loss in the appropriate way. You will start to feel much better. Hugs, Pegg
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Hi, me again.....will start Kadcycla in 2 weeks . Some 7 yrs ago when I first started Herceptin I had a significant infusion reaction and required Benadryl. Is this commonly given before Kadcyla admin? I would appreciate your input re this. A new drug regimen is always kind of apprehensive to me until I see how the first one goes. Thanks for your help. Pegg
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Hi all! I am really ok! I have ascites from the liver that started last weekend, so I think the vomiting yesterday was my body getting rid of all the excess fluid that my kidneys can't process. No vomiting today. The nausea is always there from the liver tumors, but keeping something in my stomach helps. Today the ascites is much better, so the above makes sense. I am able to hydrate well enough, as I walk a fine line between renal failure and overhydration. I will talk to the MO if I have another appointment before the next infusion. I feel pretty good today! I'll get the papain tabs today.
Momonana6- I do not know if benadryl is common. I always get it as I was allergic to Herceptin. I also get Solu-Medrol and pepcid a hour before the infusion. The Kadcyla is also administered very slowly (last time over 16 hours) and the MO wants to try and do it faster this time with less volume. All in all, I had 300 mg of benadryl both days last time and two doses of Solu-Medrol, pepcid, Aloxi and Zofran. I would ask your Dr about the last reaction and suggest that your receive benadryl if they feel it's warranted. Sometimes they do not have (or read about) the past reactions. Fortunately, my Dr's are well aware of my numerous reactions to meds and tend to very overly cautious.
Can anyone tell me what nueropathy feels like when it starts? My palms are tingling/itching. My feet are less so.
Thank you all for your advice!
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Dear all,
I'm getting really worried... Since yesterday mum was feeling weird. She had nausea and yesterday night she vomited 3 times... now she has fever (about 100) and flu like symptoms.
Her blood tests on Friday were fine (platelets, white and red) and previous week too (complete blood tests).
She never had anything like that after treatment, just some slight constipation, slight nausea and (sometimes) low platelets... Is it possible that it's Kadcyla side effect after 8 days? Anyone experienced something similar?
Prayers to you all
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worrieddaughter,
Check with her doctor you cannot know what the reason is unless he sees her. If the vomiting continues you have to take her to the ER . I am really sorry she is not feeling well my prayers are with the both of you.
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Dear Woody,
thank you for you answer. She seems to feel a little bit better now. She has drunk some tea and eaten some bread and she says she doesn't feel nauseated (yesterday she had nausea since breakfast until she threw up), nor she feels pain. She has taken paracetamol for the fever, but it's too soon to see if it's working.
Since it's Sunday we cannot contact her onc nor our doc, but if the vomit will occur again I'm gonna ask dad to bring her to the ER.
Maybe I'm just over worrying (I'm very anxious), since a lot of people in our town have had flu with similar symptoms, but I've learnt that with this disease you can never know.
I just pray God that mum is going to be fine.
Prayers for you and for all the other women who are fighting against this awful disease.
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Pegg-I had an alergy like thing with my early Kadcyla-throat was closing up. So now they always give me Benadryl as a pre-med.
Moni-neuropathy can be pain, numbness or tingling. I had some with my Taxotere-the numbness. That was 13 years ago. Haven't been bothered since. It can come and go.
Worried- I agree with Woody-that sounds like the flu. I have been on Kadcyla for over a year and was recently ill, but that was from food poisoning, thanks to Red Lobster.
That kind of reaction is not typical of Kadcyla. Your onc should have an emergency number, but yes to the ER for fluids and an assessment.
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Denice, Thanks on the feedback re premed. I have always taken Benadryl as a premed with Herceptin ...same resp type reaction. Also did I see that you also took Aloxi or Emend before Kadcyla? I don't remember which but it was a blessing with the A/C 8 yrs ago. Has the Kadcyla been kind to you.? I hope it has and stabilized your numbers etc. Thanks for your help re the Kadcyla admin. Pegg
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Pegg, When I had Kadcyla for 9 or 10 months, the SE's did get worse, so not too bad yet this second time.
My first pre-med was Kytril. Then I tried Aloxi....now I am on Emend and Aloxi...and that is the best combo. So I will stick with the last 2.
Will know mid November if the Kadcyla is working.
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Dear all,
I would like to thank you for your kind words and your support. It seems that it really was the flu. Mum is feeling way better: no more fever, nor vomit and she's not feeling nauseated.
I'm sorry if I got really worried just about a flu, but I never saw her feeling bad like the other night, not even when she had chemo.
Thank you again.
Prayers for you all and your families.
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Thanks again Denice. That is so helpful. I hope that the positive effects from Kadcyla last a long time for you. Do you head in to Magee every three weeks for treatment? I hope to take it up here as I had with Herceptin and Faslodex. Peggy
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You are a blessing to your mother. Prayers for you both, Peggy
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Worried-we ALL do that! Everytime we don't feel well, we first think it is the chemo. If I get a pain somewhere, I think it is the cancer spreading.
Better to ignore it since it could be something other than the flu.
Pegg-I don't get chemo at Magee....I go to my local chemo center which is about 8 miles from me. When Kadcyla first came out, my onc asked if I wanted to go to Hillman to get it, and I turned that down.
No way do I want to fight that traffic!
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Has anyone not been able to adhere to the 3 week schedule? Because of my work schedule, I will not get the next dose for sometime, as they are refusing to administer it on Saturdays. My time interval will be 7wks unless the dr can move a couple mountains! As things stand now. they are not budging. Supposed to have a port eval d/t continued racing heart with position changes and this can't be scheduled after 2pm, but I don't get off work until 2:30. Won't budge on this either. So frustrated.
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I never went that long until I was in remisssion. But according to one of my nurses, it doesn't hurt to take a little break to give the body a rest.
7 weeks is a long time though.....If I hit remission again, I would love to take a longer break than 3 weeks between tx. But that doesn't seem to be possible.
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I haven't been on the boards in a long time and haven't had a chance to read through it all. Moni- I've been on Kadcyla for 2.5 years and haven't shifted my schedule much during that time. Nothing has been said about delaying it 4 or 5 days when it's fallen on thanksgiving or another long holiday weekend, but I know my MO would have issues with it being delayed more than a week. After the first infusion though, my administration time is only an hour (30 min infusion and 30 min observation) so I can usually do it at the start or end of the day if scheduling is an issue.Any possibility that they can do what's needed at another location? I once was able to arrange for a zoladex shot out of state. Took some legwork on my end, but perhaps it's an option if your MO doesn't want you waiting 7 weeks. Good luck!
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Denny123 and CJRT- My Dr's Rn told me that the board had met twice and both times refused to do this on a Saturday. They checked with other infusion centers and they also refused. The only infusion I have done was over two days, the first from 7a-6p and the next day 11a- 6p. Then ended up the next day in the hospital with a medication reaction that they thought I was septic with. Wasn't thankfully, just a response. For that reason, they are refusing as there is no one-to-one pharmacist and no dedicated dr on Saturdays. I am in a 6 week intensive training class and am not allowed to miss any days (short of dying, I guess) so I am really stuck. Once I am out of this class, I can do the infusion on Monday's. I explained this to them that it would be maybe just this one, as the next would be only a few days late. They are concerned that if I have a reaction, no one is there. Doesn't make any sense to me as I am two floors above the ER! If I have to wait seven weeks, I guess it is a moot point as the MO told me that I did not have that time to play with after my PET scan revealed such wide spread mets, and she wanted to start treatment in a couple days. I am hoping to talk with the MO this week and see if the time for infusion can be shortened and spread over a couple afternoons. Guess we will see.
Have a great weekend everyone! We finally got some rain in the CA foothills last night. It is really nice to see some finally. -Moni
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Wow to the 2 day infusion!!! Mine also takes a half-hour and I don't even have to stay afterward.
I can see the insurance requirements with a dr on stand-by. If the doctors have to leave early (I get mine on Fridays), I have to go in earlier.
Sure hope you can get it figured out!
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wow! I had no idea the infusion could be so long. I guess I now see why it's such a scheduling issue! Hope they find a solution quickly!
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Denny- at what point did they drop off the observation period for you? The nurses at my site said it seems like there wasn't a long term recommendation of how long they should continue to make you wait after.
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CJRT-I think the first time it was an hour-thought I would go nuts. Was a very long afternoon. Only 2 nurses were left and the cleaning crew were all at work.....and me.
I think I am supposed to wait for a half hour now, but no one sticks to that. By the time they get to me, flush the IV, print up the new schedule, etc., it is about 20 more minutes anyway.
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thanks Denny!
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I have had two infusions 3 weeks apart. The first one, after a couple of days I came down with a 3 day virus . This last one 10 days ago was better although I did have some "bloody nose" issues and a watery eye. Fatigue followed by diminished appetite. Nothing has kept me in bed and a nap here or there has helped.
As regards observation: first infusion was over 90 minutes with a 90 minute observation. Second infusion was over 30 minutes with a 30 minute observation. Nothing too bad just annoying. Carolyn from Music City
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