Post-BMX - Stage 1a IDC HER2+ - Facing Herceptin/Chemotherapy

Thanks for clarifying Beesie - I misunderstood the situation. 

Beesie and/or Orange1,

Can you point me to some understanding of the number that doesn't seem to be specifically pointed out in all the discussion? Could you mention the percentage of those who do the recommended treatment and recur anyway, in those situations you discuss?

I feel for the women who have recurrence despite doing everything they were directed to do and who then recur anyway. This is something that should be said out loud in advance, in honesty.

I think everyday of a young woman who once wrote me after she recurred after having done the recommended treatment. By doing treatment, she and her husband had, without understanding or knowing ahead of time, had also traded their sex life for that treatment, and during the decline until her death some time later, they did not have that precious part of their life to share anymore even though they remained very much in love. It was something precious that was "overlooked" in the panic to do "everything they could".

I support whatever choices people make as long as they are given the chance to know in advance what all of the possibilities are, even when they are "less likely" by the percentages.

AlaskaAngel

Alaska....I had taxol weekly for 12 weeks/herceptin with few side effects. My intimate life was far more interrupted by the reconstruction process, which included an infection that required removal of the expanders, and then restarting. I basically had surgery in February, May, August and November. That recovery from those definately had an impact.

If I have a recurrence that doesn't go well, at least I will feel like I did all I could to stick around and I won't be saying..."what if...". But I fully respect anyone's decision to choose a different path, as long as they are comfortable with their decision, particularly if they end up on the wrong side of the odds.

Sure, there are some things that I have learned as I have gone along, but I really did my research so nothing was overwhelming surprising. I have helped a few women since diagnosis, and my advice every time is to do your research. I give them a list of sites I have used and books I read to make sure I was informed. We all talk about how it is our body, and as such, I think it is our responsibility to educate ourselves so that we are also a part of the "team" we surround ourselves with for treatment, and we have asked the best questions, and made the best decisions for ourselves, whatever that may be.

Eve-I chose bmx for two reasons....one-I had very dense breasts that made finding anything on a mammo dificult, and two-I just could not live with the worry and the stress evey six months. Sheesh, even after the BMX, I worry about a distant recurrence all the time. I'm not sure I could have looked at the right side everyday and added the stress of what they can't see. They did find a non-cancerous fibroadenoma, decently sized, after removal and that didn't show up on the mammo or the mri.

Blair-I am so glad your wife is comfortable with her decision. Now, for the first infusion on the 20th, hopefully you can go with her to the first one. I felt much better with my husband there that day. The rest I rolled in and out of on my own.

Get an advance prescription for EMLA cream from the onc. Slather it over the port (don't rub it in), 30 minutes before, cover with saran wrap until time to access it. Virtually totally numbs it. Check to see what your infusion area has for perks and then decide what to take accordingly. My place has warm blankets, so I never needed a blanket. If yours doesn't, a snuggy works great to give you covered arm movement. BUT....MOST IMPORTANT....get frozen peas or ice bags, one for each hand and foot. I put mine in an insulated lunch bag and then over the ends of the fingers and toes on each hand and foot (got the lunch bag tip from another thread), ziped it,  and keep it there all the way through the infusion. Take them out occassionally to avoid frostbite. This will hopefully help with nails. Get some acetyl l-carnitine and start taking it before first infusion and keep taking it. Should help with neuropathy. Some days she will be wiped out. Try to have someone to help with the kids on those days. Take some healthy snacks, drink lots of water the day before, day of and day after. My oncology nurses said you want to get the chemo in, move it around to do its job and get it out. I always showed up with a large iced tea.

I always felt really good after infustion due to the steroids, I think, so I made sure I worked out on that day and usually the day after so I could maintain some fitness. All the chairs and rooms at my place have individual tv's and since my digits were iced, and couldn't really turn pages, I usually just watched the morning shows and napped off and on. You might take one of those airplane neck pillows. That helps in the recliner a lot Ithink. That is all I can think of for the moment.

They usually got a chuckle when I cam in with my little cooler with my snacks and 4 bags of peas, my non-matching neoprene lunch bags, my drink and pillow.

I went early so it was usually me and a couple of significantly older people who slept a lot, so I got to know the nurses well and they would usually hang out and visit.

Well, off to sleep...my birthday is officially over. Thankful I lived to see another year!

Everyone makes the choice they think is best given their circumstances. We all hope for the best for each other. There is no need to justify or rationalize no matter what the choice might be. It is just as difficult to forgo treatment and hope for the best as it is to do treatment and hope for the best.

A.A.

Meanwhile, we've highjacked Blair's thread - back to topic - his wife.

Susie...I think the gloves stuff is center by center. My doc doesn't have them as it is he isn't a huge believer in them. My nails stayed really good throughout, although no idea if it is due to icing. Now just on herceptin, I continued to uce until the last couple. They still look ok, but are very dry thin and peely.

Blairk - I thought Fluffqueen's advice on what to bring to chemo was right on.  I would add -if you did get her the IPAD, DEFINITELY bring that, and some headphones. There were a few times I was there (our chemo room was one large room) and aonther patient was having a difficult time - either trouble finding a vein or bad news or whatever - and crying/screaming, and it was EXTREMELY upsetting to me. It was a lifesaver to be able to put the earbuds in and listen to my IPOD (didn't have an IPAd at that time - they weren't INVENTED YET!).

BTW, I never heard of icing fingers/toes and didn't have any nail problems. I did take l-glutamine which was supposed to help with neuropathy - never had that either.   I also took whey protein each day (after the first few days of chemo) to help my bone marrow do its thing (on the advice of the naturopath). Never needed the Neulasta shot either. They checked me each time and I always slid through without it. I don't know if any of the stuff I did helped or not. Just telling you my outcomes.

I would strongly advise an advance tour of the chemo environment, if they do not automatically include it. It was VERY helpful to know what the place looked like, how I would sit, where I would be, etc.  I actaully walked all around, sat in the chair, really wanted to know ahead of time, and it made it much much easier that first day to know what I was walking into.  So definitely request that if it is not standard protocol for everyone.  I brought a large refillable water bottle, so it was easy to have it refilled and keep myself drinking.  Plus, obviously all that drinking made you have to use the bathroom. I hated walking around with that IV pole, so I made sure to sit closer to the bathroom, so I had less of a walk.  All the things you learn.....

Remember she will very likely be charged up (energy-wise) the day or two after infusion, from the steroids. I never had them orally, but they were put into the drip.  I had so much energy - when I went for a walk, I couldn't stop myself from running. I wanted to move the furniture around. It was a little crazy. But it all faded away about 48 hours after. Just so you don't be surprised.

Ask any questions you may have - or feel free to come over tothe TCH board. Even though the chemicals are slightly different than she will be getting (Taxotere, Carboplatin, Herceptin), it is close enough and you will get a lot of great info.

Love to you and your wife. You can do this. 

Blair, that's great news about the MRI.  It's good that the MRI 'saw' the same lesion that the CT scan saw, and it's great that the MRI shows it to be benign.  Let's hope that this is the start of a long string of good news!

Great News Blair K!!!    I will be thinking of her on the 20th!!!  She will do fine.  The three months goes by fast on the chemo and the Herceptin is a breeze. I didn't have any issues with my finger/toenails (besides being weak and splitting) and I never iced them. I know alot of women on these boards have had terrible nail problems, but I (fortunately) had none  I drank ALOT of water, and watered down gingerale was my friend.

BlairK, thank you for the article.  The cardiac issues are of grave concern to me.  My mother has severe heart disease and I have high blood pressure.  Right before this mess started, my insurance company decided not to cover the drug I had been taking for sixteen years (?) and I started on a new one.  My B/P is always high at the oncologist's and in the infusion room, but they attribute that to tension. I'm not so sure.  I worry that the anti-hypertensive is not working.  

So I am making an appointment with the cardiologist suggested by the oncologist.  I'll let you know what he says about the appropriate level of cardiac observation.