Starting Chemo September 2015; join us!
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Got my lab work and my wbc are elevated 21.1 hmm so infection? Idk waiting on dr to call.
Just wondering is it easier to log in on fb? If so how do I go about finding the group.
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annie, I got in a fight with my husband last night too. It's the first real fight we've had since diagnosis and I cried my eyes out on the shower and then just couldn't pull it together. However, the upside is that he says he is going to quit smoking. I said, I may have no choice. I can do all this treatment and change my diet and it still may come back or come back in another form (thanks, BRCA2!) We can't both die of cancer and leave our children parentless! I think that finally got to him.
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Aga mine was high a couple weeks ago. They told me it was the Nuelasta working it's bastardy magic.
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Jimmy just ignored me today Cajun. Cancer is stealing my life. You know I read a high percentage of bc survivors get divorced. People with special needs in the same boat. People with disabled vets the same. If my marriage survives the next year it will be by the grace of God almighty because the odds are against us.
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Is anyone else having 12 rounds of Taxol? I see all these 3 or 4 rounds... Are they just throwing every single chemical possible at my cancer? I'm not done until February!
Carolina, I hope you're feeling better. 3 ER trips just isn't fair, I'm so sorry.
In other news, I got my tissue expander filled so my boobs are the same size. Them my plastic surgeon says that you have to wait a YEAR after radiation to have reconstruction and it will always have excessive scar tissue and will be the "bad breast." I was thinking, "Oh, because my nipple-less hugely scarred implant "boob" looks so awesome?"
So that means the ooph cannot be done at the same time and instead of a target end date of summer '16, I'm looking at spring of '17 and two more surgeries. IT NEVER ENDS!!!!
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Annie, I'm so sorry. Marital stress is the last thing that we need right now. Be determined to beat the odds! I believe that stat. The same is true for having special needs kids or losing a child or other horrible life events. But this is one thing we can work hard to manage! My husband told me that if he is going to quit smoking, he needs me to keep a positive attitude. He said, you can have your down days and you can talk to me about it, but you CANNOT give up.
I took him a delicious lunch and his favorite Starbucks coffee to work this morning. As soon as my pubic hair quits falling out (yeah, why does that fall out FIRST?!?), I'm going to offer sex.
One of my friends who has been through 2 rounds of chemo for breast cancer + recurrence said she has permanently lost her sex drive and ability to respond (i.e. orgasm), but she tries to ensure that no more than 72 hours go by before sex with her husband. I had to really think that over, but it seems like good advice. I fear I will never want sex or feel sexy again, but it's not fair to punish my husband for that (unless I'm really sick or whatever). Sex is such a big part of love for men in a marriage, that I think I've been remiss in not addressing it.:(
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TFoxy- For the shower I put a plastic bag around it and secured the top and bottom with rubber bands. Then I just avoided getting my right arm wet so while I had the picc in, my right arm never got washed. Use the slowest flow setting on your shower head.
If you have a hand held shower, it's easier. Otherwise if you don't like there wasn't one in the hospital's shower (surprised about that..) then I was hanging out of the shower some arm extended to try and avoid water on it. If you have a thick plastic over it and don't let water run down from your should to where it could still creep in even with a rubber band and not from the other end either, then some light mist on the plastic is fine. I'd take the bag off and feel like it got a bit wet but it didn't really- just the moisture gets trapped in there. This is another reason why you need the dressing changed once a week even if it looks great, to disinfect underneath it and let it breathe a bit before placing a new clean dressing over it.
Good luck.
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Cajun, I'm on the same regimen. 4 rounds AC, 12 rounds Taxol. I was told it was the "work-friendly" option. We shall see. Round 3 AC today.
Annie, I heard from a couple's counselor that it can go both ways. Traumatic events can bring people closer too. Don't be afraid to be vulnerable with your husband, that shared experience will be a big part of what holds you together. If there's any way to leave a little mystery in the relationship (i.e. some privacy when dealing with nasty side effects), that'll help too. If there isn't a way to do it, keep your sense of humor.
My son got some serious diaper rash yesterday. During the night, he started fussing because he lost his pacifier. I retrieved it, rubbed his back until he relaxed and settled. Maybe he was a little too relaxed. He let out a long loud fart and started bawling. My husband and I laughed hysterically as we fed him some baby Tylenol for his broken butt.
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Was anyone given the choice of Taxol or Taxotere? I was not, nor was I given an explanation about how the two differ, though they are in the same family of drugs (taxanes). I'm going to demand a full accounting for both at my next appointment Friday.
Was anyone told that the hair loss could be permanent? I just read that there is a 6-8% chance the hair won't come back with Taxotere and I'm not sure if that includes Taxol as well? Nobody EVER said that to me, not the nurses, not the breast cancer "navigator", not the MO, not the surgeon. It wouldn't change my decision, but it's not really informed consent if you aren't informed!
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I was assured that with AC+T that I was guaranteed to lose my hair and my toenails were going to look scary. BUT, both would go back to normal. SCCA Oncologist said that for young premenopausal patients, there really was only one regimen that they recommended.
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Cajun- I was told by my MO that taxotere is stronger than taxol. For my age and other factors she's throwing the largest book at it. Taxotere she feels would be better for grade 3s which is the most aggressive. Other scores have indicated that I have a high chance of recurrence so she's throwing the largest book at it as she says. She told me about permanent hair loss which sure I'm not looking forward to it but since I have genetic hair loss (diffuse thinning already happening at 51) I'm bound to be very thin even before bc. Good to ask so you know the reasoning at least
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arista, are you premenopausal?
Lisa, everyone I know who has had BC in their 20's or 30's has had AC+Taxol, but I don't know why. I was in such a haze when my MO diagrammed the three "options" for chemo on his board that I don't remember if Taxotere was even up there. He just said, we need to go with the heaviest hit we can against this and circled the top, which was the AC+Taxol.
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CajunQueen and DLCygnet - I'm scheduled for two more every-other-week A/C cycles followed by 12 weeks of Taxol. Taxotere has not been mentioned. (Unless it was one of the many things that flew right over my head during the Onco consult.)
No one has cautioned me that hair loss might be permanent. I'm frightened of Taxol SEs, especially the numb fingers and toes....
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The onc nurse told me in her 12 years she's seen 1 person whose hair did not grow back. But if you go back to page 6 of this group someone jumped in to scare us all that she's still bald.
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I am more perimenopausal- I'm 51 and still have periods though it's getting less some months and even almost skipped one one month. But I'm being treated as a pre since I haven't stopped yet.
Sounds like you may have misheard it? Being in a haze can do that. I'm mind boggled how they figure out what you should be doing since so many factors play and no to people with those same factors necessarily have the same regimen. I really think part of it is a great guess.
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My doctor said that there were two main options - ACT and TC (Taxotere/Carboplatin).
She decided not to have me go down the ACT route because there is a risk of cardio issues associated with the ACT and I have a significant family history of cardiomyopathy (others not me, though I may carry the gene for it). She put me on the TC also because I'm HER2+ and needed to get the Herceptin/Perjeta for that...so my protocol is TCHP. There is some risk of cardio issues with the Herceptin too, so she wouldn't want me to have the double whammy on my hear that the A and H would give.
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Ahhhh I'm so confused!! Between all these chemo drugs!! My Onco never talked about which one either. He just said this one. 4/3 taxotere
Thx Annie, oh what type of reaction did you have to the taxotere?
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Sooooooo not a fan of the potential heart issues with the A. Even though my echo was good, I hate that they aren't rechecking it halfway in. My MO said that if I feel out of breath or whatever, they'll do some testing. Ummmm, wouldn't that be too late? But he said my insurance (which is excellent) won't cover it mid-treatment.
I'm so tired, I just want to go home and sleep but our new bed is being delivered this afternoon (which is a complete blessing, don't get me wrong), so I can't really do that. Chemo + lack of coffee + lack of Adderall + getting up at 7 with the kids and cleaning the kitchen = exhaustion before noon and an all-day headache.
If my hair never grew back, I would spring for a crazy expensive awesome wig in a much better color than my natural hair.
I finally found something that helps me sleep (Valium) and my MO said that he won't prescribe it for more than another 2 weeks (I've only been taking it for 4 days and it's the first sleep I've gotten). Because, what, I'm going to become a drug addict during chemo? If he can't give me a good explanation for that on Friday, I'm going to my psychiatrist, that's BS.
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NOW I remember - thanks edwsmom! (Stupid chemobrain!)
The oncologist DID mention there are some studies that suggest the carboplatins (I assume Taxotere was the other half of it) were slightly more effective on people with BRCA mutations. HOWEVER, this route would cause my white cell count to crash harder than the AC+T regimen. With a son in daycare and my intention to keep working, neither of us thought it was worth the risk. She wasn't even going to mention it/worry me with it, but wanted to be thorough in case I was off doing my own research.Insomnia - ask for Lorazapam/Ativan. For your "nausea," of course. It gives me 6 hours of uninterrupted sleep at night. And best of all, I don't feel queasy in the morning!
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Cajun...I was told that the heart stuff is fully reversible after chemo....so that's at least a good thing!
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DL - that's interesting. I wasn't told that about the white cell stuff. So far I've done well on the Neulasta. She said my white cell numbers were much better than expected (thank goodness I guess).
I too have a child in preschool and I'm working so we're in the same boat.
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She might have been thinking about adding the carboplatins to the AC+T regimen. I don't know and I can't remember.
I had a grade 3 tumor as well. Weird.0 -
I'm trying to focus on some good things.
- Planning my son's 3rd b-day party.
- Getting Christmas cards made up (we had some family pics taken right before I started chemo).
Question on the cards...in the past we've done a card with a family photo on it. I'm thinking this year maybe just a card with a picture of our son? What do you guys generally do? (if you have cards made up)
What other things can we busy ourselves with to have some fun and stay positive?
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Anyone know why A is even prescribed when it obviously causes heart damage, even if your heart is healthy to start??? WTF? That's a pretty hard SE considering how many people acquire heart disease and such related issues without additional help from chemo meds!
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I had family portraits taken the week before I lost my hair. My son is at that age where he doesn't want to smile for the camera anymore, so we picked a picture of myself and my husband looking fantastic with great smiles. My son has a curious look on his face. It's our first family Christmas card. My parents always did group shots too. Probably a good thing for all the people with dementia/short term memory loss in my family. LOL
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Lisa, you were told that CT was MORE effective for BRCA mutations than AC+T? I should have asked more questions.
I was so scared that the cancer was spreading after my bilateral msx when I found out I had 2 positive nodes that I really wanted to jump right in. I started less than a month after surgery and a few days after the drains were pulled. I was also swayed by the fact that my MO did his fellowship at my alma mater, whose medical school I have 100% confidence in. I'm doing everything in rapid-fire sequence... makes me wonder what questions I need to ask about my radiation before I get there.Sometimes I feel like this is all a shot in the dark. Or, as my friend with triple neg. at 31 says, "a wing and a prayer" that any of this actually works and the cancer doesn't come back.
I firmly believe this is in God's hands, but all the uncertainty is so nerve-wracking.
Thanks, edwsmom! I guess if I can make it through this without a heart attack, I'll consider it a win.
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I did some extensive research on Adriamycin. The severe heart issues are very rare. The reason they echo so often is to catch stuff while it's small and reversible. It's a pain but hey I'll take it. The super downside is you need to be monitored for 8+ years for SE.
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Aga I had anaphylaxis on my 2nd round of taxotere. Couldn't breathe, turned beet red, super heated up.
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Lisa, our sons are almost the exact same age. My son will be 16 months in under two weeks.
He is testing boundaries like crazy, it is so hard to keep up. But I finally got the "all clear" from my surgeon to pick up my kids so I feel like I can actually parent again.I'm going bald for any pictures for the card. Everyone already knows and has seen it. Plus, it will accurately document the year.
I wanted to take family pics before surgery but I got in for surgery when a woman with a UTI using the same plastic surgeon had to cancel her bilateral. I had about 19 hours notice before I checked into the hospital.
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arista, I agree that the severe issues are really rare with A and would typically be seen in somebody older and with pre-existing problems. However, there likely will be some damage, just not a lot of damage, which the subsequent echo will document. I'm trying to keep my protein intake up to help with this but it's a tough balance between trying not to eat a lot of meat and dairy for estrogen reasons, and keeping up the white blood cell count.
Curious - those doing CT, do you get the Neulasta the day after infusion? That stuff is the devil, but it really works.
Annie, what are they monitoring for 8 years? Heart issues? Another thing I wasn't told, though I know I will be followed for 10 years due to the aromatase inhibitors and I'll start the bone density scans next year.
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