Who's on Kadcyla/TDM1?
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Hi every one, hope every body is doing ok,
I just looking for some advice regarding having intercourse (sorry if inconfortable For some one)
I Never had any advice regarding The matter from any doctor , and i will want to know, i been reading about it but still not clear.
Should i take any precautions about it and for how long? Can I kiss?
Please any advice will help, thanks in advance .
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Hi Ladies. Just dropped in. doing great and may get a break in another month. Feels good to think about a little time off. Still have to get herception and perjeta . Also about the question above. I did receive some warnings when I went on Kadcyla. One had some warnings for intercourse, be very careful, be very gentle, your bones are so fragile. So easy to break and then use your own judgement. Have a great day.
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Pasque:
I so glad that you stop by, I so glad to hear from you...how are you feeling?
I will like to know how are you doing and if you are feeling ok ? maybe ifyou can ( if you are kind) to explain what is happening with you and the treatment that you are taking.
Thanks in advance.
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Hope everyone is doing well. Saw my onc today for my PET results and I am about the same. So I will stay on Kadcyla and the next PET scan will be in Dec.
Still going to PT for my broken leg and shoulder. They sure take a long time to heal. I don't use my cane inside my house, but need it when I go outside. Shoulder is taking a lot longer to heal since they couldn't do surgery on it.
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I've been on Kadcyka for 4.5 years and never was told anything about sex. I had an oopherectomy during this time and was told that if I had sexual issues because of menopause that we would address them. I assume by the 3 different doctors' comments about menopause issues that they think women on this drug can still engage in sexual relationships. Maybe the caution was due to the type of bone mets rather than the medication itself? I would ask for clarification. Johns Hopkins also has an online free "Ask an Expert" page, where they might be able to share their advice to patients on Kadcyla.
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Denny- glad you can stay the course on Kadcyka but sorry your injuries are taking so long to heal. I know how frustrating physical therapy can feel but hope the end results make it feel worthwhile, like it did when I had to go.Sending you healing vibes!
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Thanks you ladies for the replays,
Hope everybody is doing well.
Have a great week
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Hi, everyone, hope everybody
Is doing good.
For the ladies who had been in this fight for a long time I will like to ask if any of you have special diet. I know people who stop eating meat or sweets or wheat.etc
I will like to hear some input regard this matter, I worry because I cook in my house for my family, and I get very confuse with the info in the Internet .
Thanks!
Have a great day!!!
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Great question Escorpion!!! I'm always wondering about this myself. I did ask my MO a while ago and she said to go live my life and not try to drive myself crazy with all diet fads. She did add to of course, try to eat an overall healthy diet and avoid processed meats (like sandwich meats) as they have been linked to cancer in multiple studies.
Any other inputs????
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I actually put that questions out because I am always been intrigue to what really can cause cancer, anyway I whent to the cancer society web, and found the list of proven carcinogens and one of them Is red meat....so I am been treated with Katcyla medication so if eat read meat that will increase the chances to the cancer to came back?
My doctor told me the same that I should go crazy with the diet , but If this list has been proven to cause cancer should I continue to eat red meat?
Thanks for the input
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Interesting topic. I run a breast cancer support group in my county and my speaker in Oct will be about nutrition.
We have her yearly as a speaker and she always tells us that everything can be eaten in moderation.
I wonder about the red meat, but since my red cells are always low, I do eat it on occasion.
When I had my recurrence 6 years ago in the lymph nodes in my chest, my onc suggested that I try the WINS diet that suggests we eat less fat. I did lose 20 pounds, but the nodes just got bigger.
So I kind of gave up since the Kadcyla is really what is keeping me kind of stable at this point.
Everyone should avoid the greasy fried foods, sweets, etc. But I won't cut out all dairy like some ladies do. I need the calcium for my Osteoporosis.
One lady in my group eats only vegetables, but that really isn't healthy at all.
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I agree with you ladies, actually one friend mine that has ovarian cancer is doing all the natural vegetarian diet and also is doing only homeopathy. And let me tell you she doesn't look well ( I think we need to have a balance diet to keep us strong)
Actually she was stage 1, and now she is stage 4, regardless all the estrict diet she is been doing still couldn't control the spread of the cancer.
I read somewhere that toxins and all the pesticides get store in the animal fat. So i guess that maybe The meat is not that bad when is lean? Is just the fat?
Thanks!
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Hi, girls,
Been reluctant to post as things have gotten worse & didn't want to discourage anyone.
I fell in July and couldn't regain my balance; in fact, I was "listing" to the right and somewhat out of control. Was told to get an MRI, in fact, to go to the ER. Instead, saw my PCP the next morning. He saw my eustacean tubes were clogged up so put ne on Prednisone and gave me a script for an MRI, told me it wasn't STAT but I should have it done. Waited for the day my CT Scan was scheduled (my Keystone so called "Gold" plan, which costs us over $2,000/month, charges a $250 copay for either but if you get them done same day, only hits you with one $250 copay) and it turned out that it was a 3-cm. tumor just next to the cerebellum, affecting balance and coordination.
I had thought, as did my MO, that the balance difficulty I was having was due to neuropathy. Weird thing is that an MRI is never ordered until you're symptomatic. Well, a fall is a symptom.
Had neurosurgery at Temple Univ. Hospital on August 9th, Neurosurgeon said he got it all though it was a five hour procedure followed by almost two weeks in the hospital, and I'm working through rehab issues, including correcting impaired walking and eyesight issues. I am six weeks post op and doing relatively well. I will have radiation just as soon as all swelling is gone. I am not a patient person and I miss driving. Even after some tough chemo battles, I felt generally capable. So, this is a challenge. I am learning some invaluable lessons and trying to learn how to slow down. Not easy. But I've had great support. My husband, who is not the nurse type, has bent over backwards to help me. I don't know how he's doing it. Apart from some wrinkly shirts and indulging a lot in take out, my life is OK. I see that my eyesight is very gradually improving.
Saw my MO today and resumed Kadcyla (welcome back, drippy nose and neuropathy!) and she is very optimistic as she notes that my original mets site, the liver, has had its tumor shrink even more. NEuro will monitor the brain issue by MRI's every 2-3 months, followed by zapping with radiation any recurring tumors.
Any questions, fire away. This is apparently not uncommon.
Regards to all,
Miriam
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(((Miriam))) Hugs for you! Sorry to hear about all of the above, but I am really glad that it turned out okay.
It is also good information for the rest of us. Praying for better health for you!
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Miriam,
thanks for posting, I glad that you are doing ok, it gives me courage, I going to keep you in my prayers, we are all togheter in this battle and I thank God for the friendship that it's has became in this group and because we can confort each other. Because we understand.
Wishing you the best!!!
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Miriam.
I would like to ask a question if is ok?
I notice some patients that have tumours, get radiation first to see if the Tumor can shrink and then surgery after, I notice that you got first surgery and then after radiation. Is some condition that can determine the procedure to take.
It will make any difference witch do first
Thanks.
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Thanks for the encouraging words and offer to pray,
Escorpion, my tumor, even though it thankfully was only 1, was a bit too big to do radiation successfully as a first course of treatment. Apparently, 3-cm. Isn't huge, but it is too large to hit with localised radiation first.
So, they wanted to get all of it, and surgery is the best method. I never felt pain, but was in the ICU overnight, apparently on a lot of opioids. My good gut flora had taken a beating so my lactose intolerance has really gotten worse.
I think that I now have a much better sympathy for folks who need rehab; what a pain in the butt! But I have to make myself. Sidewalks are my friend if I have my walker with big wheels (Tom helped me find some on EBay) but it's not my favourite form of exercise. The worst is the diminished convergence, which is the ability for the left and right eyes to work together. If I really want to see, I have to cover my right eye and use just my left. But I know I'll get there.
Apparently, HER2 patients have this as a potential outcome. And once it crosses the blood brain barrier, it can morph into a more aggressive cancer type which mine did not.
I know that God orchestrates all the events in our lives; while much of this on one hand is scary stuff, we are not in control of these situations. So I appreciate your prayers.
I'll keep you all posted.
Love,
MIria
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Miriam.
thanks for the answer, I really dont know if should post this information or not but I hope it can help someone. My friend who had a Tumor in the head just pass, and she told me that her Tumor was big a size of lemon....and if I recall she got first radiation to try to shrink it...? And she was changing the medication from herceptin to Katcyla, what I hear was that the Katcyla was working but the radiation only shrink the Tumor half....so the Doctors decide to have operation ..... After that she didn't got better , they put her with Esteroids and she got very inflated because of steroids.....so I think it was too much for her to take .... The radiation the new medication y the operation all in matters of maybe monts ..... So I notice that some doctors will do operation first and others radiation......
Sorry for posting this .... I just want to be prepared in case .....
And I glad that everything is working for you....
I also have a friend that got a Tumor in the head too and he got operation and then radiation and Quimo and he is doing great... Like three year after he is doing great.
So I guess it depend!!!
God bless you and give you allot of health.
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Thanks, Escorpion,
Well, I was told by the neurosurgeon, who was the head of the dept. at Temple, that location was critical. Because my sole tumor was not tiny, and it was seemingly unattached to the cerebellum (which was the case, surgery determined), they believed they could surgically get all of it, whereas radiation wouldn't be so precise.
Radiation afterward would just be to ensure all seeds would be hit. At least, I believe this is what was said. My daughter took notes, and those are at home (I'm on vacation in the Poconos).
The neurosurgeon has my confidence, having performed a couple thousand of these surgeries. Plus, I just really felt good about him after Fox Chase recommended him. I trust these guys. I've been messing around for 7 years, and I shouldn't say "messing around" but I am amazed that I'm still here. I am now thinking about dropping meat from my diet. We will see. There are some meats I love (eggs - are they meat?, LOL).
Sometimes, it is done with radiation first. I think what probably made mine different is the location and the certainty that they could remove it. The tumor was 1/2 inch from an important area in the brain; much closer, it would have caused hydroencephalepathy. As for me, I am just glad it is out. Took a walk today on a trail, the most distance I've gone, with just my cane for support. It wasn't far but it felt good. So, I hope tokeep increasing the distance.
Life is good and I want to treasure each day here.
Miriam
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Miriam Willits:
Thanks for clarifying all this doubts,
Certainly you are a very lucky women ....
I hope you will messing around for long time.... keep strong!!
Hugs
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Miriam, I will say Prayers for you. Hugs~
had labs today... as always do every 3 weeks... sigh. and i have mentioned before my AST is slightly high. now today.. my ALT has gone up a bit. this happened once before. today my AST is 52 my ALT is 56 ... all the other "liver related" in lab is good and well within limits. Can you ladies tell me... what does your AST and ALT numbers run? I hope my time isnt near to get off kadcyla as I dont want liver damage. ...dr I did speak... my next step if when off kadcyla will be back on herceptin and then add tykerb.
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Hi DL3, I just looked back at my ALT and AST numbers for more than a year. For the entire time that I've been on Kadcyla - about 10 months now, they have been elevated but with a range of ALT 36-59 and AST 43-53. Prior to going on Kadcyla going all the way back another year they were pretty much always in the 20-30s range but even before Kadcyla, I had a few outliers where the ALT spiked to 58 for no apparent reason. My MO has said that these number are considered fairly slight elevations and she wouldn't really worry about them unless they shot up "significantly and/or suddenly". So, based on my experience, I'd say your numbers are pretty much in the range of acceptable.
On a different matter, I wonder if any of you Kadcyla ladies have experienced either thyroid nodules and/or capillaritis? I am in the process of undergoing various tests - so far ultrasound and in another week or so, guided needle aspiration biopsy -- of thyroid nodules that suddenly lit up on my last PET scan. I am not terribly worried because other than the thyroid (which was not a prior metastatic site) there was no evidence of metabolic activity on my PET. And the say that breast cancer mets to the thyroid is very rare (never mind that every diagnosis I've had thus far has been "rare" - not to worry!) but curious whether this could be related to Kadcyla.
The capillaritis is strange - it's a skin condition where tiny blood vessels (capillaries) burst right at the skin surface creating a sort of reddish pin-prick polka-dot pattern. No pain, no itch and no explanation as to why I suddenly had these things appear on my torso but they've stuck around for several weeks. It is not listed as a "known" side-effet of Kadcyla so just wonder if anyone else has experienced it. Much as I want to believe that they are "nothing to worry about" as the dermatologist says, I find any change in my body to be concerning at this point and I expect there to be reasons for anything that does change. I'm not very happy with a response of "well, this happens to some people, we don't know why but it's nothing to be concerned about." I just hope they are right!
Otherwise, everything continues to be good on Kadcyla! lol
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Thank YOU MargariaMI for sharing you AST/ALT numbers! you are AWESOME. yes Onc was too worried said my numbers are allowed to get higher before we get concerned. as said all other numbers are great that are associated with liver. i do have my regular CT scan upcoming in couple weeks I believe. I have been on Kadcyla just over a year. I think I am going into #18 infusion this week.
no issues with thyroid with me.
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DL3:
Thanks for bringing up the subject, I never check my lab results, and now that you are mentioned mine show as L : AST:44
ALT:41
I going to continuing chequing on those , because the nurses can miss them... You never know.
No issues with thyroid for me.
My husband got it removed years ago.
Hugs!!!
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Thank you for your reply Escorpion!!
I have been reading up some more and I have seen ladies triple the AST/ALT number. not what my Onc will allow to happen tho. as said dont want to damage liver.
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can one of you pm me with what to expect on this drug? I had been on Xeloda for the past 5 years but now my cancer is back in my liver. I will be starting this therapy next week after a week off of Xeloda. I will follow this thread now but am not quite up to reading the whole thing.
Thank you
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Leftfoot- Kadcyla is pretty easy. I wouldn't worry about any particular side effect since we all seem to have different ones.
If you notice anything that might be a side effect, just come back on here and ask about it and we will chime in if we also experience it.
As far as the AST/ALT, I asked last year about my levels and my nurses said they don't really watch them since my liver is doing as well as can be expected considering the fact that in 2004 it was filled with tumors.
I will have to ask about it again.....
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Hi leftfootforward! the main SE's I get are runny nose. I do get infusion on Tues (every 3 weeks) and seems like clockwork.. friday afternoon fatigue hits me and lasts thru Monday or so. but today.... I had no fatigue really and it is Friday! those are my main SE's I did notice my BP has gone up since being on Kadcyla. and... now my AST/ALT liver enzymes are rising ... all other liver numbers are great... but ... kadcyla can effect your liver so we are watching this . for now that is all I can think of. really it is an easy drug. oh I do complain that the infusion itself only takes 1/2 hour but the manufacturer of kadcyla recommends the patient stay an additional 1/2 hour to monitor. THAT is a big complaint for me LOL and my team knows it. 18 cycles now of kadcyla.... I would think if I was gonna have allergic reaction I would have by now. but they make me stay unless I sign a waiver . sigh.
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Hi Leftfootforward- I seem to be pretty much like the group. AST/ALT levels are elevated but just monitored at this point b/c they are typical for those of us on Kadcyla. SE's are overall very manageable. Biggest complaint is fatigue the weekend of treatment (in fact I'm on the couch now just laying low). However, I just have to keep in mind that by tomorrow morning I'll be up and around again (it can just get frustrating at times). Also, some of us have the runny nose thing (which I get on & off). For the most part, I'd say out of all the meds. I've been on-this is best by far as my last PET scan 4 months ago brought me back to NED (wahoo!). Wishing you lots of luck!
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thanks everyone. My first treatment is Thursday. I'm not worried about the fatigue as I've been on Xeloda forthe past 5 years and fatigue is a big SE if that drug.
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