Who's on Kadcyla/TDM1?
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Hi Topacio/Escorpion! Good to hear from you. I’m sorry to hear about the brain mets but glad that the gamma knife was successful! I hope the trial is going well. You said you are taking Xeloda, Herceptin and placebo? Do you know for fact that you are getting a placebo because it seems like knowing that would defeat the purpose of the placebo study, no? Well, perhaps I misunderstand you. In any case, glad you checked in - will “see you” around on these boards now we have both moved on from Kadcyla. Good luck my friend!
M
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Hi Margarita.
I am in her2climb trial, talking herceptin , xeloda, and placebo three drugs( i don't know if I taking tucatinib the placebo drug)
Sorry I didn't explain properly.
Thanks my friend i wishing you and all the
Lady's here , heath and strength to keep fighting.
God bless you all!
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Hi Topacio and Margarita
I was just curious why you moved moved on from Kadcyla? What are you doing now other than Topacio doing the her2climb. Very interested in that, Plan to talk to my oncologist about it next week. I have ct scans and MRI every 2-3 month from the neck down Im good , from the neck up i keep developing tumors. December I actually had a seizure because one tumors had gotten very larger. I was almost 3 years cancer free and then this happened. Ive had 2 gamma knife procedures since Dec 2018. First gamma procedure I had 4, the 2nd was 16!!! Just curious about the her2climb and find out what treatment Margaritas was doing and if its been successful?
Thanks Ladies
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Erkipper:
I was in Katcyla for a while and in the end of las year I got my original Lymb node right arm growing again, it was very small and my oncologist recommend to do operation witch I reject it ( because it was going to be very invasive) and then I ask for radiation so they give me target radiation in my Lymb node, that got rid of the Tumor.....
But because my onco Didn't follow the radiation treatment i have a residual cells that grow again not in my underarms but close to my breast.
I truly believe that I could been still in Katcyla if I got extra radiation for the remaining cells, because the radiologis told me that breast cancer is very sensitive to radiation, any way because I not very happy with my oncologist I want to move away from his care , so I push for him to send me to clinical trials.
And luckily I did because the care I have now is unbelievable....they also found a 1.5mm Tumor in my brain , that my oncologist didn't informe about one year ago?? I got gamma knife and now got rid of it.
Her2climb are in the second part of the trail ....
The hospital where I am now, is one of the best and the team for her2climb are amazing .
Let me know if I missing any information.
T.
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Erkipper, I also forgot to mention that there is another blog here call "Brain met sisters "you can find allot of info, there are allot of beautiful ladies that can give you great info.
Take care.
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Erkipper, I was also on Kadcya for fairly long time - 40-plus infusions (48 I think!) which amounts to a couple of years on the every 3-weeks schedule. I too had progression while on it but we tried to extend my time by doing SBRT to the progressing spots - they were on my spine first and then in a spinal muscle. I think it was good to do the rads and good to extend time on Kadcyla since it was otherwise treating me pretty well but after a third progression in an even shorter period of time, we decided that it was time to try something different. I'm now on Herceptin and Keytruda. It's not a standard treatment to move on to I think especially for HER2+ but since my genomic testing showed that I have a high tumor mutational burden we decided to try it since that's one of the factors that seems to impact Keytruda's effectiveness. It's now only been a few months on this combo so I really don't know whether it is working but I do feel good on it and the muscle aches that coincided with muscle progression have largely disappeared so I'm hoping it is working. Scans will come soon so will know more then.
m.
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Hi Margarita, thank you for sharing an update. I recently experienced progression in a thigh muscle in the proximity of the femur operation I had last year. This small spot is the only active spot detected on a pet/ct scan . Metastasis to muscle is rare, I was wondering if you had local treatment, e.g. radiation aimed at the spot in your spinal muscle ?
I wish you success with Keytruda and Herceptin.
Meja
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Hi Meja, yes, I did have SBRT to my muscle. It was successful in that it seemed to have successfully killed off the initial muscle lesion, however, within several months I had a new muscle lesion very close to where the radiated one had been. That is when we decided to move on from Kadcyla as this was the third small progression while on the drug and the interval between progressions was shorter each time. We did not radiate the second muscle lesion since we decided to try a new systemic treatment. I've just had my first PET scan since starting the Keytruda and there's is no longer evidence of active cancer - the report specifically says that the muscle lesion previously noted is resolved. (yay!) I would definitely recommend radiation as it was really a managable process and potentially very effective. You are right, muscle mets seems to be somewhat rare (I've only come across one or two others with muscle mets on these boards) so would be great to hear how you come out. Best wishes!
Margarita
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Hi Margarita, thank you for getting back to me.
Congratulations with your first great scan result after starting Keytruda !
I started radiation (10 days are scheduled) - hoping this will resolve the small muscle met. Due to this progression, I will be switching treatment approximately 2 -3 weeks after having finished radiation. I live in Denmark and the oncologists will always switch systemic treatment at the first sign of progression....that's the way it is done. I was otherwise doing well on Kadcyla, so rather sorry to leave this line of treatment. I have discussed various systemic treatment options with MO, and right now I am leaning towards Herceptin + Xeloda.
Interesting choice Keytruda - you mentioned genomic testing in a previous post; did your oncologist initiate this being done. I am curious to learn more about this option; thinking it could be relevant - can you share information about where this is performed.
Thanks again.
Best wishes, Meja.
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Thanks, Meja! Regarding genomic sequencing: mine was done at my MO's suggestion - I had a new biopsy of the muscle met prior to radiation to see if my cancer had changed since the TDM1 seemed to still be working on all my previous mets and there were no new sites of progression. MO was looking for anything that might be actionable and what we found was that I have a high mutational burden. Not many of my mutations were known to be actionable themselves (ie: not many with specific treatment options) but collectively, the number of mutations, my MO felt, made me a candidate for immunotherapy. The testing was done in-house at the hospital where I am treated. It's a large university hospital so it has many good resources but I'm sure there are any number of places that can do similar testing. I'm sorry that I don't know much about the testing and to be honest, I don't really understand the results but they did offer a few treatment options as well as identified clinical trials that might be relevant. I know that my tumor remained ER and PR negative and HER2+. Did you also have a biopsy prior to your radiation? If so, then perhaps that sample can be tested for actionable mutations and/or clinical trials.
Margarita
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Meja, I also meant to mention that the other treatment that had been suggested for me was a combination of Tykerb and Xeloda.
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Thanks Margarita, I did have a biopsy prior to radiation, and the metastasis is identical to previously, i.e. Her2+ and ER+. I will speak to my oncologist about genomic testing. Actually another oncologist mentioned Tyverb + Xeloda, but my own oncologist leaned more towards Herceptin and Xeloda; she phrased it: ‘Tyverb is not the success story we were hoping for’. I’ll need to look more into that statement.
Thanks again, have a great Sunday! We are having a late summer heatwave in Denmark ☀️.
Meja
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I had kadcyla on Thursday and found exercising today to be so difficult. Anyone else? I think because I felt so sick on my initial chemo regime that I forget that Kadcyla is actually chemo so when I don't feel right or when I tire from exercising it surprises me.
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El7277, I sometimes felt very fatigued on Kadcyla. Overall, I felt like I tolerated it well but then sometimes I just felt SO tired and had to give in to napping so yeah, I understand how you feel. It is easy to forget that Kadcyla is actually a powerful chemo agent.
Meja, I didn't really understand why my MO was suggesting Tykerb rather than Herceptin to go along with Xeloda because I also saw some research papers that suggested Herceptin might be more effective in that scenario but since I had opted for the other drug combo, I didn't pursue it. Please keep me posted - feel free to PM me if you'd like since we've sort of been hijaking this Kadcyla thread.
Btw, glad to hear you are enjoying a heatwave. I visited Denmark in the summer a few years ago and was surprised how chilly it was - but really beautiful nonetheless. Margarita
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hello Topicaico/Escorpion
I understand how not getting an MRI is stressful.
I'm just finishing radiation #26/30 doing the extra boost 5 days to the chest wall (internal mammary glands). My med oncologist now recommends Kadclya instead of just the Herceptin. I already started Herceptin Feb. 2019 and did Perjetta along with it.
I am afraid of mets....how do I continue to just live day to day with this cancer in the back and mostly the front of my mind!! The med oncologist says we don't do any MRI or bone scans unless there are symptoms.....
Please help me understand this process. Being triple positive even though I got the whole treatment:
chemo (AC-T); Herceptin started and Perjetta ; mastectomy; radiation (6 wks); and now Kadclya starts in two weeks for about 6 more months......
trying to put life back together.
Wishing everyone some strength today.....xo
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countca04,
I know is ironic to tell you don't worry, but if I learn something is that I waste too much time worrying about things that i can not control, and I stop living because of fear.
When I found I have cancer was already spread to my bones, so I didn't have to go to the anxiety to think about mets...( I have others worries) but if you think about it there are many women who doesn't have cancer, but have the risk of having cancer and they are living with this fear too.
The best thing to do is keep yourself Inform about all the treatments and also this blogs, help allot.
What help me allot is reading about what to expect, for example I know that her2 can be metestastized to the brain, so before I got it I read all about it, so when I found I have it in my brain wasn't that bad.
Also you have to know that Her2 have allot of treatments , now I taking herceptin with xeloda, and there are many more drugs that can be combined with herceptin.
Regarding to the brain met, in can be easy treat with gramma knife, there are women who have had like 40 different radiation treatments zap in there brain, and there are doing ok,with no side effects .
The medicine is changing fast with more good treatments.
I soon going for genomic sequencing that can also help in how good I can respond for certain medications.
So take a big breath ... Enjoy life follow treatment and stay Healty ....
maybe you will never get metastasis who knows? and you will always be worry...Stay positive, and keep living ....
T.
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Kadcyla does it matter if you are Her 2+ or Negative?
Sorry to regurgitate, but at my witts end . I cannot figure out why I should go on Gemzar when I was on Xeloda and progressed. No cool combo drugs. Hmmmm.
Initial dx 6/1/2009, IDC, <1cm, Grade 2, ER+/PR+, HER2- node Negative.
Tamoxifen for 8mos then Lupron.
Hormonal Therapy Arimidex (anastrozole)
Surgery 6/5/2009 Lumpectomy: RightRadiation Therapy 8/1/2009 Whole-breast:BreastHormonal Therapy 11/1/2009 Arimidex (anastrozole)
2nd dx
Dx 11/1/2013, IDC, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+
Surgery 1/1/2014 Mastectomy: Right; Prophylactic mastectomy: Left
Targeted Therapy 2/1/2014 Herceptin (trastuzumab)
Chemotherapy ,Carboplatin (Paraplatin), Taxotere (docetaxel)
Dx 10/1/2014, IDC, <1cm, ER+/PR-, HER2-Hormonal Therapy 11/1/2014 Aromasin (exemestane) finished herceptin in July-Aug 20153rd dx
Skin mets Right side locally Sept 2015IDC, Right, ER+, HER2-Metastatic treatmentTypeExternalSiteChest wall radiation 3/2016 was finished .
4th dx
4/2016 Pet scan then revealed left lymph node involvement and chest wall . Her2- estrogen + progesterone-
Ibrance and fasoldex 2yrs almost
Masses shrunk to nothing markers normal no Ca.
But allowed liver mets to develop.I never had any imaging prior to 10/2018. Oncologist was relying on tumor markers to indicate growth. But never noticed them going up on Ibrance or rather was not concerned.
10.10.18 markers up 187
Liver mets 5 masses liver biopsy . Her 2-, Estrogen +,progesterone +.
Lupron stopped -Xeloda 11/2018-5/2019
Markers over 1000 /15 masses biopsy lymph node her 2-,estrogen +,progesterone +. 50% proliferation.
Dioxl anaphylactic reaction stopped.
Now on Halaven thrid cycle markers still going up. Liver enzymes up. Well over 1000.
Now told to stop Halaven and will put me on Gemzar.
Needed to purge,reset.
I do not know what to do.
Any words on Immunotherapy.
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I was on Kadcyla for almost 4 years and am/was Her 2 +++. When it quit working, Foundation One testing showed that my chest node tumors were now BRCA2 Somatic positive. So now I can have Xeloda which is typically for Her 2 -.
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I'm hoping and trusting something will finally come to light.
Waiting for foundation one testing to come back.
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The Foundation One testing showed that I could go onto Lynparza, but a clinical trial of Poziotinib (taken while waiting for the testing to be done)...cleared out my chest nodes in only 8 days.
So that is why I am now on Xeloda with Herceptin.
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Great great results. Very encouraging.
I asked my Onc about Kadcyla she said it was for me.
I have been waiting since June for the results they dragged their feet. Meanwhile the gave me Chemo that can damage my heart and my hair is falling out and my markers are up up up.
I'm now taking Gemzar the epigastric pain is severe.
Bloating etc. I'm not sure if this is normal. Very afraid. I was fine Friday. I look like I swallowed a watermelon.
I really haven't had remission or any break Im tired.
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rejoining as I will be restarting this drug in combination with neratinib.
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I started Kadcyla last month, 3 infusions so far. Have had steady progression for 18 months and nothing else has worked yet, so keeping my fingers crossed for some good luck with this treatment.
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I see my onc on Monday. Had last hHer,Perjeta and Taxotere 3 weeks ago. I feel worse than I expected. The last 6 weeks the nausea,numbness in Hand and feet(. I can’t remember the correct word for it) are bad. Fatigue seems to be worse. Now I will start Kadcyla on Monday I think. I almost want a week off to see if I can get some strength back.
I guess I’m scared of side effects I’ve read about. I’m worried about heart and lung issues and neuropathy.( There I remembered the word. ). I’m home a lot. Staying out of stores ...I walk about 10 minutes and I’m out of breath.
Scan is due in Dec. Wondering if QOL is going to be worse. I’ve had MBC for 2 1/2 years.
Does anyone have comments on QOL? Do you take Perjeta too ? I’ve lost 15 lbs and a lot of my strength. Will i improve now that Taxotere is done. I guess I’m trying to figure out how much more is worth it. I feel like my family doesn’t need this to drag on . I’ve had a good life.
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Maire67 - Sorry for what you are going through and how much more discouraging it is when you feel so miserable. I've been on Kadcyla for years and have had an excellent QOL on it. Symptoms have been fairly predictable of me and much, much easier than my prior regimen. I feel slightly chilled, queasy, foggy, and exhausted the day after but everything but the fatigue improves by the following day. I do feel more exhausted for 2-3 days after, but not so much so that I can't perform my daily activities (though I don't work out or anything major those days). My platelets drop, and my liver enzymes fluctuate, but nothing that my MO has needed to address. For me, the most annoying side effect has been nosebleeds, as I have discussed at length in the past with Denny. Using saline nasal gel constantly and not ever blowing my nose has helped to minimize these. Hope you are on a treatment path that has allowed you some better QOL.
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Oh, and I was getting headaches on day 5-7 until they added fluids on my infusion day. The saline drip seemed to help immensely...with the headaches and even with some of the fatigue.
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Thank you CJRT. After a three week break, I had first Kadcyla two weeks ago and I haven’t felt this well in months. They did keep me on a slow drip for an extra 90 minutes. I did feel a little tired the first day & slight nausea but so far so good .My scans found some new mets in my pelvis and spine. I start rads on Monday. Hoping it will help pain. But the awful fatigue, nausea and diarrhea is gone. I sure appreciate your advice . QOL has improved.
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maire - good to hear you have been feeling much better! Hope RADS work quickly on the pain and that you continue to feel good
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I'm just wondering what others have experienced with Kadcyla side effects? Are they worse at the beginning? Does it get better? Specifically stomach discomfort/bloating?
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I was on it for 4 years. I had nausea (but not throwing up), constipation, and mild nose bleeds. Dry eyes and dry mouth.
I changed from a Kytril pre-med to Emend and Aloxi which was better. And I also liked Emetrol, an OTC syrup for nausea.
For constipation I took 300 mg of stool softeners and a dose of Miralax daily.
The nose bleeds got progressively worse, but I finally read on here to put a bit of Afrin on a Q tip to swab the inside which really helped.
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