TRIPLE POSITIVE GROUP
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My port was in the non-cancer breast, and had to be removed when I had prophylactic mastectomy on that side. I had three H+P infusions to go, which I did by IV in my arm. The port didn't bother me much, other than I like to sleep on my tummy and it was uncomfortable. It also had an infection at some point. All in all I was glad to take it out.
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I will finish my last infusion of H&P August 1, if I could would have gotten it out the next day but unfortunately surgeon wasn’t available until September, but I’m ready for it to be gone. My skin is very think and the three prongs stick out and aggravate my skin.
My doctor will take my port out in her office with lidocaine, did others have it removed this way? I’m a little worried about that but nurse said it is an easy procedure
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I know some of the chemo drugs are rougher through an IV but I never had a port.
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MACTAZ, I had mine taken out in the surgeon’s office with lidocaine, and it wasn’t a problem at all. I only felt a little tugging. We chatted the whole time. I said I wished they had a mirror on the ceiling so I could watch what they were doing. They didn’t think that was a good idea..
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my port gave me blood clot, so it was removed during surgery. I am now on H+ P, through IV, no big deal
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I too was superstitious that if I took out the port, I would need it again. Took it out at MO's suggestion after the first mammogram after I stopped Herceptin. My MO's office is quite close so flushing wouldn't have been too big a deal, but I was surprised at how relieved after I had it out. Cancer takes away so many choices so I'm glad most of of us have the port one to make.
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PatinMN, thank-you for the info. That does make me feel better about it
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I'll probably have mine forever, but I'm a different case of course. The first one I had, in 2008 was huge! I hated that thing. This time it is rather small and I hardly ever notice it's there at all. I put that cream on it and I don't even feel it when they stick me.
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Hello everyone - Get my port placed tomorrow morning. Scheduled for 12 rounds of Taxol for 12 weeks along with Herceptin, then Herceptin once a month for nine additional months. To say I am scared of chemo is putting it mildly. How do guard against neuropathy? I have so many questions and my mind is just swirling. From what I read this is almost an impossible chemo and targeted therapy regimen? I am also going to do cold capping in an effort to save my hair. What do I take to keep my nails, too? Any supportive input is welcome. Thanks
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Wheatscapes, there is a board for Taxol.
https://community.breastcancer.org/forum/69/topics...
I've had 8 Taxol infusions and it's not as bad as AC was. My main side effect is fatigue and intestinal distress. I've had very mild numbing in my toes but not bad. Everyone is different and it's cumulative. I've iced my hands during infusion and I think it's helped prevent neuropathy.
Good luck🤗
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Hi!
I think everyone is scared of chemo. I did 12 rounds of Taxol, and I found it to be very doable (especially after four rounds of Adriamycin + Cytoxan). Heck, I worked through it. I did get mild diarrhea on Day 3, but Imodium helped with that. Taxol also messed with my taste-buds, so I ended up eating a pretty bland diet. I had already lost my hair with AC by the time I started Taxol, but I've read that cold-capping works better with the taxanes like Taxol. I kept my nails and only suffered mild neuropathy in my fingertips. Some women ice their hands and feet. Some take i-glutamine to ward off neuropathy.
Listen to your body! Keep a journal of any side-effects so you know how to prevent them/cope with them. As soon as I woke up on Day 3, I would take my Imodium so as to avoid any "surprises" at work and elsewhere.
Good luck! You can do it!
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wheat - the TH regimen (Taxol + Herceptin) as a stand-alone is regarded to be somewhat easier as it is a single agent chemo, as opposed to those with combinations of chemo drugs. That said, it is still chemo and while some have issues, most do just fine with it. There are some recent posters on this thread who have done this regimen and have come through without too many side effects. I would recommend eating as much protein as you can during to keep your blood counts as high as possible. Exercise is also beneficial, even if it is a walk - getting some oxygen is key. Hydrate - try to drink as many ounces a day as the number of pounds you weigh. This helps flush the drugs out and keep your kidneys functioning. Be sure to tell your oncologist how you are feeling each time you see him/her. Here is a link to some side effect sheets I used during chemo - I found that writing things down was helpful, as side effects were different with some rounds than others. I used one set of sheets for each infusion.
Taxol is known to cause neuropathy. Some believe that icing helps prevent neuropathy, and I know there are some studies looking at icing as a possible benefit. I received Taxotere, which is a stronger drug, and used supplements rather than icing to help with potential neuropathy. As always, please be sure to run any supplements by your oncologist before using them during chemo and later targeted therapy. I used 30g of L-Glutamine, taken in three 10g servings throughout the day. I used powder form dissolved in a cold and non-acidic drink. I also took 1500mg of Acetyl L-Carnitine, and a 100mg B6 capsule daily. I did ice my hands and feet, but did it for nail lifting and loss prevention. I used a bag of frozen peas for each foot, placing the peas on the top of my nails 10 minutes prior to the start of the Taxane drug, and kept them there for 10 minutes after the infusion was done. I put a towel in my lap and had two bags of frozen peas and dug my nails in. If you ice for neuropathy prevention you need to ice a larger portion of your hands and feet than I did. I think there are some suggestions on the Taxol thread for the easiest ways to do this. I had a Tervis tumbler of ice chips that I kept in my mouth in an effort to prevent mouth sores. Wishing you the best and please do not hesitate to ask any questions you may have - this thread is a great source of encouragement and information - we are here to help you!
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Wheatscapes - welcome to you! in addition to the Taxol thread there are also threads (under the Chemo subcategory) for people starting chemo during a particular month. I am in the June 2019 chemo thread. We talk about side effects and other things there.
My protocol is the same as yours. Having my third treatment tomorrow.
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Wheatscapes--Taxol was not fun but not awful for me. Starting several weeks in, I'd have a pretty good day 1-2 (probably because of the steroid pre-med), start to flag day 3, be kind of draggy day 4, but then bounce back. I never felt nauseous, but took some of the anti-nausea meds days 1-2, mostly because I had them and figured they couldn't hurt, plus I think they helped me sleep at night while the steroid was still in my system. I worked throughout. I never had any tummy impacts. I also did not get a port. I can't stress the "push the protein" enough. I had red meat 5-6 times a week, eggs every day, and a protein shake every day. My blood counts stayed really good throughout. I think it really helped me through Taxol. I didn't cold cap (I'd read too many stories about women who did but still lost >50% of their hair), also didn't ice, but made a point to wear sandals on tx day and said no thanks to any warming blankets. I figured if the point of icing was to keep the extremities cold, I could do that <somewhat> just by what I wore. I ended up with a little bit of neuropathy on the bottom of my feet, but not bad at all.
I know some treatment centers cut down on the pre-meds (steroid, Benadryl, Zofran, Pepcid) if you're not having an allergic reaction but mine did all of it all 12 weeks. I think that worked well for me.
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Hi Wheatscapes! I don't post much at all, but I felt I had to chime in for this one. I had (am having!) the exact same treatment as you. I had taxol + herceptin from Sept thru Nov, and have had herceptin every 3 weeks since then. I have 3 more. ; ) Just wanted to let you know that I was scared to death, and reading these boards made it even more so. But, that was good I guess since I was fearing the worst, I was so pleasantly surprised to find it was not bad AT ALL. Unlike you, though, I didn't do a port, and so far, my veins are holding strong. I kept 99% of my hair with paxman. I went on to radiation, and now tamoxifen, and again with those - no big deal AT ALL. From these boards it seems as though I've been very lucky with regards to side effects. I didn't stop exercising or working. No one except my husband, sister, and two kids even know what I'm going thru. Anyway, you can do it! It'll be behind you before you know it, promise. ; )
Re-read your post, and just to add, quickly: I did not ice my hands or feet and had no neuropathy. I did take biotin throughout, and still do.
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Can I just query some of the old-timers--how long after Herceptin did your nose stop running? I'm five weeks out today and am thinking in the next few weeks most of it will be out of my body. I started Flonase a week ago based on someone's recommendation and I think it's helped some but my nose is still going fairly crazy. I'm sure seasonal allergies are a confounding factor but I am so over running through the Kleenex. . .
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Very interesting article on Nerlynx in Stage IV
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ingerp - it has been a long time, but I believe at the 6-8 week point. The end of my Herceptin also coincided with allergy season - which is early in Florida, so the water was muddy for me too. The regrowth of nose hair seemed to help me (who knew it was so important!!!), so by the time Herceptin ended my drippy nose had eased up a bit too. Hope it stops soon!
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Have not had Herceptin or Kadcyla since April 22nd so 60 days. My nose is still running but not bloody any more. Still getting sudden shoulder blade area pain but it goes away faster. Still have intense leg muscle / joint aches. Neuropathy is awful but very slowly getting a tiny bit better. Constant fatigue lifting, more energy and endurance. Had to stop due to terrible neuropathy. MedOnc wants me to try Nerlynx and go back on Kadcyla when/if nerves heal more.
Doing a lot of supplements and foods shown to eradicate and inhibit cancer. Praying a lot!
Toenails going thru major changes still from the Taxol.
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Thanks for the responses. I know this too shall pass but I was just curious when I might get back to normal.
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My chemo advice is to expect eating to be way, way different and if you find something palatable go for it. I developed a fondness for Steak ‘n Shake chocolate milkshakes! Also even if it tastes vile, drink lots ofwater.
It seems like the newer members aren’t doing the TCH like many in the past have.
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Ingerp, oh the runny nose, I can relate, but I will continue on Herceptin until November. Kleenex is always close, at home, at work, in the car. Cascadians, my MO suggested I use tea tree oil for fingernails, if it is not too late for you, I had two lift off on my hands and my big toe is having problems. I try to keep them as short as I can. Buy some pretty nail polish, it will make you feel better! I should have used the tea tree oil more often (and on my feet as well).
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Hi everyone! Just finished 6 rounds of TCHP around 10 days ago. Amen! I’ll be moving on to surgery, followed by radiation, followed by 5000 years (or so it seems) of medication. Lol
Just wondering what you’ve noticed happens post chemo. (Hair, nails, taste buds, stomach aches, etc) Anything that felt surprising or anything I might expect?
Thanks in advance!
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Paloma, thank you for the laugh - 5000 years of medication, I needed that today!! Amen, sister. Post-chemo - you can eat again! Best wishes, Lisa
edited: P.S. Limit your alcohol intake, in case they don't tell you, and you may not even be interested in that. I personally think they need to mention it more often, for people like me that enjoy a cold brewski.
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Ingerp, I had my last Herceptin the 1st week of Feb and it took months to resolve. Like till end of May, four months. I heard from somebody else six months.
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Laughing—thanks for this. I actually like hearing it's not just me. I can live with 3-5 more months of blowing my nose 100 times a day as long as I know it'll settle down eventually. (Here's to a mucus-free holiday season??)
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And I am still not 100% normal. I also have allergies and still carry tissue everywhere. But not the constant drip anymore. At least I see progress. At points I thought this could be permanent.
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Thanks for your support everyone! Good to know that my chemo regimen is doable. Wish my port placement had gone smoothly...They used twilight sedation along with local anesthesia. Twilight did not work. I wasn't asleep or even remotely “out of it" during the entire thing. The surgeon was blaming me for being awake and then mid-way threatened to walk out of the surgery because I wasn't asleep. Mind you, I wasn't talking. The versed made my face itch and since they had my arms strapped down I couldn't scratch it. So I asked the nurse to do so. I'm pretty sure I had an allergic reaction to the versed. Anyway, he got so desperate he started blaming my BS for not placing the port during my BMX. 🙄
Anyway, I’ve purchased some 8 hour ice packs for my hands and feet. I think I’m ready to go. I’ve had to d/c my Wellbutrin antidepressant due to interactions with Herceptin. No biggie, family doc said it wasn’t doing anything anyway since I’ve been taking it forever.
I’m already so ready to be done with all of this, and I haven’t even started chemo, yet 😬
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Wheatscapes - seems to me that your surgeon should have been blaming the anasesaolgist (spell check isn't helping me here) rather than you! I'm glad I got my port as I'm not a particularly easy stick. Hang in there - we TP do have a long haul but herceptin has made a huge difference!
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wheat...fyi...there are 4 antidepressants you can take if you need to : lexapro, effexor, celexa, and trintellix
Just in case... 😳
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