TRIPLE POSITIVE GROUP
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Susan, you have to keep posting here. You seriously crack me up! Keep us up-to-date on the anorexic, penile-implanted ex. He sounds like such a prize...
GG, are you on a bisphosphonate? They are known to cause osteonecrosis of the jaw, plus fractures of the long bones (femurs usually). It is rare side effect but I thought I'd ask.
Lago, so far my bone density is good, but I'm hurrying to get some dental implants done so I can have those placed before my next dexa. Something tells me Fosamax will be my new friend soon :-(0 -
GG2 We all had lots of surprises. I found out my D was so low just before I was diagnosed with BC that I was in the single digits! I also found out that I was osteopenic before I did chemo at age 49, perimenopausal. I mean I don't know about you but I felt the best I did in my life and then they told me I had BC.
Don't worry about not knowing stuff. That's why this is so tough at the beginning. Most of us didn't know much. This site and the folks on it are great. Triple positive means your cancer has the markers for Estrogen, Progesterone and HER2+. There is therapy for the ER/PR component (some kind of pill after chemo) and targeted therapy for HER2+ (Herceptin).
In 3 days you see your oncologist. Be sure to tell her/him you don't know what it means to be triple positive. S/he should have explained this to you. Being triple positive means you have a pretty aggressive cancer. The good thing though is you have a bunch of different treatments to treat those components. Those that are triple negative (also agressive) don't have Herceptin and Endocrine therapy (estrogen sucking or blocking pills) to help fight their cancer.0 -
Hello GG. All of us came to BC knowing practically nothing. Except that we were pretty screwed! LOL. We learn with every step we take to combat this thing.
Susan, sorry you dont at least have the perkies! I to am one if those who have a lot of what I call "scenic detours" its been 22 months snd will be 2 years before I have my perkies! LOL. BUT WE Go AHEAD and just get through it. Much love to all.0 -
lago, nice to see you back! I hope your event turns out great!
GG2, welcome! Don't worry about not knowing too much. Some of us have been at this a while and still don't know a whole lot. But fortunately there are some great ladies on here that know tons and are very generous with their wisdom and encouragement.0 -
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Susan,
I'm with Pbrain; stick around - stories like yours with your ex 😜 - I'll be watching for an update!
Detours seem to be par for the course for most of us; it seems to be more 'normal' to not be straightforward! I started off with going to my doctor with a pain in my sternum, and a week and half later I got a dx of mbc.... Since then, I've had numerous weird se's to treatment. I always tell my onco that it's because I don't like to see him bored and that I never do things by half!! Hopefully you'll get your perkies, and soon 😊
GG2,
Welcome! All of us felt like you at the beginning of our journeys. I hadn't a clue about bc other than the very basic information. You've come to the right place though. No question is too basic or silly to ask, we were all the same starting off! I also have mets as do other great ladies on this thread. Feel free to pm me if you like. I can't guarantee to have the answer but I can help you find it. There's loads of knowledge to be tapped into here!
Nicky0 -
Hello to everyone new and old , havent posted much but I need to vent.
Ive been up most of the night in pain , advil not doing much for me . Taxol / herceptin #7 this thursday , dont know how i will get through this . I cant hide from my children they see that im in pain , my little guy has been sleeping with me past two nights in the guest room . He's worried , told him it was arthritic pain , how do I explain whats really happening to me ???? I cant see the light at the end of the tunnel , Im tired and worried, feeling hopeless and helpless ..... ugh sorry and thanks for letting me vent0 -
Momx2,
I'm sorry you're having such a rough time. It's so hard when you know your kids are watching, and their happiness depends on yours. Have you spoken to your doctor about your pain? If Advil isn't enough, maybe they need to give you something stronger to get through this. Is the pain an se of the taxol? Are there other issues involved? Maybe if you give us some more information someone might have an idea about what might help you. In the meantime - vent away. We're here to listen. Hang in there!
Nicky0 -
Momx2, I am so sorry you are experiencing pain with the Taxol/Herceptin combo. I see you are on week 7 and think that is when it started to be bad for me, too. Advil didn't touch it, but unfortunately I didn't find much that helped except heating pads.
Ativan helped a little because pain can cause so much stress and anxiety. I did try my leftover narcotics from surgery, but they just made me sick. Talk to your MO - I have heard that they can lower your dose. My MO always looked at me like I was from the moon - like noone ever complained about the side effects that I had, but he would usually approve any suggestion I brought in from here. Have you gone on the Taxol boards to get advice? I finished a year ago and thankfully I am beginning to forget a lot of that portion of the journey. Meanwhile, I'm holding a flashlight for you and grabbing your hand. You only have 4 more to go, right? You CAN do this and we will be with you every step of the way. It is ok to tell your kids that you are in pain, but just keep reassuring them that you are almost done and this is temporary. How old are they and do you have any help?
Something to look forward to - all of the pain and neuropathy from Taxol did go away. I wondered if it would ever leave me completely. My aching thighs and feet continued through my Herceptin treatments. That is nearly gone, too. Gentle hugs, honey.0 -
Nicky , Vballmom thank you for support. My pain is from taxol / herceptin , experiencing mild neuropathy also . Ive checked the boards and they recommend supplements , Also spoke to MO and she said BComplex ok to take , bought never took it . I dont want to complain dont want my dose decreased , I'll tolerate the pain I just wish I could mask it better . I have 5 more doses left of the combo last 2 weeks have been really bad , its been overwhelming ,feel like this is never going to end . Does life ever go back to a new normal ? Ive been up since 2am , Im rambling .
thanks for listening and allowing me to vent0 -
momx2, I had 12 weekly taxol and Herceptin, but I didn't have AC first. My observation from the "weekly taxol" board is that those who have AC first have much worse side effects from taxol. I had mild side effects, and no pain. I have been taking Tylenol (650 mg 3 times a day) for years, for arthritis. That may have had something to do with the no pain. When I saw a rheumatologist for the first time (many years ago) about my painful knees, he told me that taking pain medication periodically, when there was a flare-up of pain, just doesn't work. You have to build up your blood level of whatever you're taking in order for it to work well. And keep taking it even if you think you're feeling fine. That advice worked for my arthritis.0 -
momx2, yes you DO want to complain to your MO! He/she needs to know the SE's you are experiencing. Don't feel bad about letting them know, they have heard it all before, even if they say they haven't. I had to have my chemo reduced twice because of SE's. The dose they start you off with is the standard dose, but not everyone can tolerate the "standard". You won't be able to eliminate all the SE's but you should be able to treat them so that you don't feel quite so miserable. (((hugs))))0 -
momx2 hugs! Wish I could give to you in person. I dont know how any of you ewth children at home do it at all. I am in awe of you people daily. I could barely get out of the recliner and take care of myself let alone a child or two or more. So just getting as far as you are is impressive.
I am one who had to get my chemo reduced. They start based on a calculation of weight and height for skin area. But I am a large woman who is very sensitive to medications and the stronger one put me in the hospital. I asked the MO if the reduced chemo would be enough. His answer? "Well, you have to be alive for ANY of this to work!" Um, yeah.
I called for any SE that lasted more than a day and they were always glad to help. Much love.0 -
HI LADIES!!!
~waves~
I just wanted to stop in and say I think about you guys several times a week. Is everyone still ok?
I'm on Facebook and would love to connect with some of you there. Lago and I have already connected. (Good job on the fundraising LAGO!!)
Anyway, if you want to connect send me your name in a PM and I will friend you on "the headbook" as my son calls it.
Hope everyone is well
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Momx2.
I did the weekly Taxol and Herceptin for 7 weeks after cytoxin and adriamycin. I agree with Patin-most have said it is harder with AC prior. I actually had scripts for Oxy and liquid morphine--and have a really high pain tolerance. I was taken off Taxol and Herceptin after 7 weeks due to a new shadow on a MRI so I could have surgery.
Had a call from Genotech today about being taken off Herceptin. Wanted my verbal report of my perception of experience with Herceptin and being taken off it. Said I should expect a call from a FDA rep. Which I already expected. I explained to the person who called today-I WANT their drug. Very much. I NEED their drug. Being taken off was NOT my idea. I was willing to sign any legal document allowing me to have the drug, follow up with ECHOs and closely monitor EF, take cardiac drugs. Whatever. I WANT their drug. To no avail.0 -
momx2 You must tell them about the neuropathy. If it's too bad they will reduce your dose because you don't want permanent damage. They calculate how much chemo you get based on your skin surface (height & weight) but it's not exact. Sometimes you get too much. I think I might not have complained enough about the neuropathy in my foot. I new have permanent damage to my left heel. It's not terrible although some days it acts up a bit.0 -
momx2 I had my dose of taxotere reduced aswell - I didn't want to because I was terrified of losing its effectiveness but as lago stated sometimes they just give you too much for your weight/size. They reduced mine by 10% and I cant tell you what a difference it made. I was literally crippled by the first dose and breezed through the last 2 (I had 3 taxotere, different drug but in the same family of taxanes). I do not have neuropathy which I am grateful for
waving "hi" to everyone aswell - wish I was on FB so i could connect with everyone but I cant be bothered quite honestly - I have an acct no pictures tho which apparently makes me a FB creeper0 -
Susan , Im sorry your tx was stopped . I pray it will be restarted .
This is why I tolerate all these se , fear of tx being reduced or interrupted . I believe most of us have that fear . Tomorrow will be tx #7 and Im scared howI'll be , the stairs to my bedroom are getting harder to climb , I cant feel my index , middle, and thumb fingers my feet are horrible feels like walking on rice .
Thank you to everyone for your words of advice and encouragement . This site is truly a blessing because everyone here gets eachother , we can be ourselves here without judgement0 -
momx2,
I'll be thinking of you tomorrow, I hope it's not too hard on you. Definitely see about getting the dose reduced, that doesn't mean it won't work - it just means that you'll tolerate it better and be able to finish out the treatment!
Nicky0 -
momx2 -- I too had a really hard time on Taxol+Herceptin. When my neuropathy started they did a small reduction in my dose. It didn't stop the neuropathy, but kept it from getting worse. But, I had LOTS of pain. Doc gave me a prescription of Hydrocodone. It worked very well for me, if I took an anti-anxiety med (Xanax) with it. I think the reason the two worked together was because I was stressed out about the pain -- worried I couldn't function, worried those around me would see how much pain I was in, etc. I didn't have two children to deal with, however, my DH might as well have been a 5yo, because he gets scared anytime he sees me hurting. I often broke the pills in half, and didn't have to take as much.
I do believe it is important to manage the neuropathy well. Mine is primarily numbness in my lips and gums, and my fingertips, with occasional painful tingling in my arms and hands. Before they reduced the amount, I was cutting the tips of my fingertips all the time when I was chopping veggies. I can live with the amount of neuropathic pain & numbness I have now (6-weeks pfc) -- before they reduced the dose, people were eating my fingernails!
Also, remember you are getting two drugs right now. For some people the herceptin causes body pain -- it does with me! So your pain will change when you are done with the Taxol. For most people it goes away entirely!
The good news is, as of tomorrow, you will be 7/12ths done!
Good luck!0 -
momx2, taxol made me anemic, which caused me to have a problem climbing stairs also. It's a normal SE of taxol. If your hemoglobin gets too low they would give you a transfusion, but I think that's pretty rare. As for your feet and fingers, ask your doctor or chemo nurses if you can take glutamine (30 grams per day, in 2 "servings" of 15 grams each) and vitamin B6 (100 mg per day). There are studies out there indicating that they help with neuropathy. It worked for me. I read about it on these boards, and when I asked my chemo nurse about it she gave me some sample packets of a brand of glutamine called GlutaSolv and a 2-page summary of all the good things that glutamine can do. (They didn't bring it up until I did, but obviously neuropathy is a common side effect). After I finished the GlutaSolv samples I just bought a tub of glutamine powder at GNC. 15 grams is about a heaping tablespoon; you mix it in whatever liquid you like and chug it down. I know some docs won't allow supplements (6cats!) but I think most don't have a problem with it. I hope everything is A-OK for your treatment #7 tomorrow!0 -
hi to everyone! Best wishes to all you still in the throes of treatment. Will be Thinking if you Momx2 tomorrow!0 -
mom. Hang in there you are almost done. I had weekly taxol and the neuropathy got really bad and my MO was dose reducing me, by my final 4 treatments I was at 50percent dose. All neuropathy has resolved except a little in my feet. Feel free to PMme if you just want to vent. Those 12 weeks seemed so long but they soon will be over with for you!0 -
Miss Mom (((((((( hugs )))))))))
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Hello ladies-
I have been pretty regularly reading this board but do not post much. I wanted to get some input from those of you whose Neutrophil Absolute Count was too low for any given chemo? I had to defer/skip my weekly Taxol chemo again today because my Neutrophil Absolute Count was too low again (still had Herceptin). This was supposed to be my 6th of 12th treatment, and I am pretty bummed that I had to defer Taxol again. This also happened two weeks ago, so it my second time having to defer. They did give me Neupogen after Herceptin to protect me for these next couple of days. However, the last time I had Neupogen, it didn't seem to really boost my white counts by the time I got to treatment the next week. I just want to get this chemo crap over with so I can get back to teaching second semester and move forward with my life!
Any input from any of you would be wonderful.
Thanks much,
Nichole0 -
dxat32 - not too much you can do to raise your WBC (and thus your ANC) but I am wondering if your onc would give you prophylactic broad-spectrum antiobiotics so you can proceed with chemo?
All - had a skin cancer removed from my upper back yesterday - I continued to bleed right after they closed, so they had to re-open, incise again, cauterize and close again. I have a 2" incision and it hurts a bit - I think more than normal because they had to re-open it. They did get a nice margin though - important because this was previously treated so they think it was a recurrence. Had a bit of trouble sleeping because I couldn't find a pain-free position, but I am tired enough tonight that I think I will sleep regardless. Had a flat tire on the way to surgery and ended up getting a ride from a very nice police officer - in the back of the police car, lol! I have another one to remove in two weeks, then another one two weeks after that.0 -
SpecialK, wow you really had an eventful day! I do hope that you can find a comfortable position tonight and get a good nights sleep! I am glad they were able to get good margins and I hope they get good margins on the other ones coming up in a couple weeks.0 -
Hugs Miss Special!
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Special K, loved your story about the police ride. Were you able to get a tire? Sorry for the uncomfortable night, I hope you can sleep better today.
I am going to sleep early.
Wish everyone a restful night.
Vivian0 -
aww....special K, I hope you'll get some sleep tonight.
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