TRIPLE POSITIVE GROUP

My oncologist suggested that I keep my port for two years post last Herceptin as most Her2+ driven recurrences occur within that time frame. If I had resisted he would have understood, but I had no problem keeping it. My port was put in during my BMX (I had surgery first as Perjeta had not yet been approved) and I had no external scar as my surgeon installed it under the mastectomy flap. He also used a very small port and it didn't show even though it was subclavian. I ended up keeping it for six years, it was finally removed in late 2016. I never minded going in to the infusion center forport flushes, it was a way of staying on the radar and also a way to ask questions or get faster action on any problems. I do understand why some want their port removed if it causes a negative association or any emotional response, or is a complication.

I get my port flushed every 6 -- 8 weeks at my infusion center. I do it when I'm getting my Zoladex or I have an appointment with my oncologist. The only thing I dislike about my port is when I go through airport security. The scanners inevitably pick it up, and some female TSA agent ends up groping the left side of my chest.

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

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..

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.

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.

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🤗

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.

https://www.cancer.org/content/dam/cancer-org/cancer-control/en/worksheets/chemotherapy-side-effects-worksheet.pdf

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!

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.

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. . .

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!

Thanks for the responses. I know this too shall pass but I was just curious when I might get back to normal.

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).

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.

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??)