Who's on Kadcyla/TDM1?
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Good luck!
My PET scan wasn't good. I do have a reduction of some of the previous nodes, but now have new nodes affected...in my jaw (but that might be from dental work), by my vocal cords and at the opening of my left lung.
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that is wonderful- smooth sail to you ahead!
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oh Denny, I am sorry to hear that. What will the plan be? Can they ultra sound the nodes they think could possibly be from dental work to verify?
Rest well tonight
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Longtime, I won't see my onc until Dec 1. I will give a copy of the report to my dentist on Nov 23 since I have an appt, but they will probably ignore it since it could be from dental work.
Will have Kadcyla tomorrow, since my onc is on vacation.
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Glad you get Kadcyla tomorrow- I wish you a very good Thanksgiving- we all know our docs need vacations but we all don't like waiting much even so. Do you think your Onc will need to fn biopsy the new nodes? It seems a bit odd that those would crop up while reduction of some others. Hm
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Oh Denny so sorry to hear. I hope your onc figures out what is best for you. Hug
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Thanks ladies! Feeling better after I talked to my chemo nurse yesterday, who read over the PET scan report.
Seems that the vocal cord and lung nodes were there last time, but they weren't on the report. And nurse really thinks that jaw muscle areas are from the sinus infection problems that I have been having.
So I have 6 areas that have been there, and the 7th spots is iffy.
I am sure my onc will keep me on Kadcyla, since the growth wasn't too bad. I had a tx yesterday anyway.
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Hello all! So this week I started the Kadcyla on Mondays, 1/3 dose. It took 8 hours! 75mg is diluted into 250 saline and is started at 20mL an hour, and increased to 30 then 40 ml /hr. At 40ml per hour, the itching started, then anxiousness, then the swelling of my throat. all this after 50mg benadryl, pepcid, solu-medrol, aloxi. Benadryl repeated, steroid repeated. This continued almost every hour throughout the day. I am unsure if I can do this. I've felt crappy all week, still vomiting yesterday. Now it is Saturday and I work weekends. Monday it starts all over again. I don't even know if this is working. My liver enzymes have dropped some, but now are stable ext. high and no movement for weeks. I have distension to the liver area and feel like my body is wasting. lost 15 lbs, so far. My pathology is her2 100%. I don't want to only have this quality of life for the time I have left. Any ideas anyone?
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Hi! I was on Kadcyla a year and a half ago and did fine for most of the time I was on it. The side effects build up over time so I had nothing except towards the end. The slight nausea was easily controlled with Odansetron and the joint pain did not show up until the one year mark. I started to get some slight neuropathy towards the end but nothing like when I was on Taxol!
Unfortunately I am HER2+ and my cancer came back in my lymph nodes so I was taken off Kadcyla and put on THP which failed to work also.
Wishing you all the best and praying that Kadcyla works great for you!
Barb
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Hi Denny, I am really sorry that you had a grey area in the Pet SCAN report. It sounds overall that the rogue cells may have settled down . Good news. Question...did they check questionable areas with an MRI? What was thought to be a sinus area last Sept was a tumor around my pituitary gland. After surgery and now tomorrow I will start rads to the area. I have learned that such tumor areas are toughies to dx and then to plan tx. After rads my hope will be back to a Herceptin/ER+ tx plan. The pathology report showed that the tumor remained HER2neu and the ER+. I am still unsure about Kadcyla since the HER/ER+did well by my markers and scans etc. anyway, I wish you some good answers and that wonderful freedom feeling that goes with it all. Best always, Peggy
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Oh boy does that ever sound like a long day, Moni731. I don't have any ideas, but thoughts run to can't they lessen the dose a bit since it's obvious your body is fighting it? When's your next scan? With a big response it would be worth going forward but I would sure want a report on shrinkage and or stable disease. Sure do hope you are feeling better this next week for the holiday
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That is great news Denny-- thanks for sharing!
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Longtimesurvivor- I have not tolerated the full dose even when they ran it over two days. My MO is trying to give me the normal dose cut into thirds once a week. We do not even know if this is going to maintain a therapeutic level. I am allergic to Herceptin and had to stop it with the first dx. I do not know when I am to be scanned again, but will ask at next appt. My liver still hurts and the lump in my breast does not feel any different, so i don't know. The CA 27-29 has dropped from 2600+ to 1350, so there is that. At least this last Mondays infusion did not require a hospitalization! Mornings seem to be the worst, feeling a little better tonight. Thanks for getting back.
Moni
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Moni - that is a challenging situation for sure. But it is showing hope with the tumor marker change. Some women report pain in abdomen with Kadcyla and don't know if that could be what you feel. But trust yourself and whether you need to request an earlier scan or another opinion on chemo options. That's just my opinion!
Take care tomorrow-
Allison (Longtimesurvivor)
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Wow Moni-you ure are going through a lot! My throat had the swelling and I get a pre-med of Benadryl now and it helps.
Since Kadcyla is a super-Herceptin, no wonder you are having problems. But I am encouraged by the fact that your markers are dropping.
I will have to ask about mine, but they haven't been very high.
My onc will probably wait for an MRI, although I always ask about one since I am so worried about brain tumors. But I have had a sinus infection for the last 3 weeks, which is better now. It will probably start up again since I had Kadcyla yesterday.
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Denny123- I'd push for that MRI! They are not that expensive and if it puts your mind at ease, it's priceless! No radiation is an extra plus!
Week two for the 1/3 dose. Aloxi, pepcid, solu-medrol, benadryl 50mg. Started Kadcyla at 20ml (6mg) for 1/2 hour. All good. Increased it to 40ml (12mg) for about 20 min it was ok. Then my ears started to itch, swell, hives, choking sensation,wheezing, panic! More benadryl and steroids, waited 1/2 hour to restart Kadcyla at 20ml again. Everything ok, increased to 40ml again. with more benadryl. Stayed at 40 for a couple hours. tried to go 60ml. Hives, flushing, itching, choking,wheezing, repeat benadryl, steroid. Break. Back to 40 and stayed there for remainder. occasional repeats of benadryl. For 75 mg of Kadcyla, it took 9 hours, 250mg benadryl and three doses of solu-medrol! I don't know. I guess I just need to know if this is working or I'm wasting my time. So frustrated. All the nurses have never had this happen to anyone before. If anyone has any ideas,or suggestions, I am certainly listening! Thanks
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Moni...What does your onc say? Obviously you have a very serious sensitivity to the Kadcycla admin and needs to be reevaluated so that a more appropriate and safe regimen be instituted. Perhaps it is in the preparation of the Kadcyla that your body rebels. Please seek other oncology opinion before continuing . You deserve a less dangerous option. Good luck. Peggy
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Moni-I agree! Surely you can try another chemo to which you would have less sensitivity. I know that if Kadcyla quits working for me, that I will be able to try something else.
I have asked in the past for an MRI, but insurance won't cover it unless I have some signs of brain mets. But maybe now an MRI could be ordered.
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Hi all! I have a known allergy to Herceptin and that is the culprit. Since I am 100% HER2+, I'm pretty screwed. My MO said it was a hyper-sensitivity reaction, but I don't know if she has any plans to change anything yet. About 1pm yesterday, the fever and chills with liver pain started again. I refused the ER as they have to work you up for sepsis when the cause is chemo reaction. Fever broke in the night and the pain is better. To say the least, I am not looking forward to Monday!
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Moni-
I am also Her2 +++, but was told quite the opposite as far being screwed. I had nothing as bad as you. Kadcyla gave me a vicious rash. Beyond what they'd seen at Dana Farber Cancer Institute. So when I need the next drug it is not likely I can have that again. But there is always another Her2 drug??
- Perjeta? Tykerb? Trials? I'd ask ask ask. Can't imagine what you are going through.
Best-
Allsion
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Yikes, I am wondering why the physicians are toying with meds that are so capable of causing these severe reactions. Is there not another effective chemo to try...Just asking. I would be too scared to try it again. CDS
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Thanks all! I will discuss this with her on 12/1. It is my understanding that she feels that Kadcyla is my best hope. I also was wondering about Perjeta but see that it is given with Herceptin, so i don't know. I do think it is time to evaluate another game plan though.
Happy Thanksgiving everyone! Moni
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Moni I haven't been on here much. Kadcyla and my liver didn't like each other. Her2 drives my cancer boat as well. I am now on tykerb. Xeloda is the paired favorite it seems to be working for me.
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Fujiimama- thanks for responding. So you are not doing any Herceptin stuff? I am seeing the Dr today, Not sure if she will change anything yet, but my TM's are no longer decreasing, just kinda holding as are the liver enzymes so I am not sure the Kadcyla is working anyway. I am also having continued liver pain, not usually bad just annoying.
Glad that combo is working for you! I am going to ask.
Moni
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Got a good report yesterday and the Kadcyla is working again so far !!!!
Finally figured out what happened, since the written PET report mentioned "previous nodes" that I hadn't heard about before.
The new PET image shows multiple nodes in gray and much smaller. THEN my onc showed me my July's images, which he had fortunately skipped over before in July.
That one was very bad with multiple black spots all over my torso where the cancerous nodes were. That would have made me crazy with worry.
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Denny123- Great news!
Moni
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woo hoo!!! That is great news Denny
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Starting new med tomorrow, Kadcyla. Bone mets was shown on my bone scan 9-16-15. Started on THP, next scan was 11-30-15. MO told me there was some progression so wanted to start new med . Not sure what to expect from SE. I know everyone is different. I am glad to be off Taxotere but was surprised at the progression since my TM went from 165 to 25 while on this treatment.
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Wleeky1952:
You are so right - the "everyone is different" seems to apply to TDM1. Overall, I would say that the SE's are decently managed by most.
Read through the back stories of SE. Personally, I got a horrendous rash. No idea why. It itches and was only on arms cheat and shoulders, although if I'd kept going beyond 6 months Iam sure it would have gone down my forearms and hands as I saw some newer spots showing there.
Other than that- fatigue. Constipation. Goes with the territory- and also joint aches. I did have slight nausea but not enough for an antiemetic.. Others have none- still others have nausea. Don't know what to tell you other than - Do you trust your Dr? If so, go forward. If you are iffy? Get another opinion...
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wleeky-good luck! You might not have any SE at all. I have more than the other ladies on it at my chemo center, but I have been on chemo for almost 14 years.
Kadcyla did put me into remission...I was off for too long and the nodes are back in my torso. But the Kadcyla is working well again.
It really is tolerable.
Question for the ladies-do any of you get nosebleeds? Mine are making me nuts.
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