Starting Chemo in October 2015

what did your techs say about your skin Andra? Did they say it was normal? Does it bother you when you are running?

I've had 3 treatments and while my skin looks fine, I have tenderness in the area where I had a large seroma after my lumpectomy. I'm using Jeans Cream right after treatments, aloe and calendula after my shower and aloe, calendula and aquaphor at bedtime.

Hi there,

Congrats to homeschool4us. I hope the neuropathy didn't get much worse and the end of this taxing part of therapy is sinking in, giving you happiness and adds to the enjoyment of your holiday. Sorry about all those crytic letters: HR = Hormone Receptors, pCD = pathological complete response = no tumor cells found in removed breast tissue, RTX = Radiation treatment

igay1ord: I had some cramping. For me it happend when I got dehydrated and/or when the mineral balance in my body drifted too far to the sour side. I then supplemented with basic salts which helped with hydrating, too, and sorted out this problem.

The henna art still looks gorgeous, Andra. I could imagine you are in no hurry for your hair to grow now. At least not in the next two weeks. ;-)

MDW: So happy to read you got through surgery with flying colours. I hope you, too, can sleep better now, even if a bit uncomforable at times. Speedy healing!

I guess healing progresses nicely here - guessing because I have no clue what to expect, but there is no infection and swelling is diminishing slowly. I wish I had someone telling me what intensity of exercise is safe and when I can start running again. And how about a bath or - *gasp* - sauna and swimming? Ideas anyone?

First Herceptin only went without a hitch and just might have made my feel a bit more hungry the day after.

Enjoy the weekend everybody,

Gabriele

Hi everyone,

I'm feeling good this morning after being able to take my first post-surgical shower. Yay for feeling clean again at last! Especially with hot flashes/night sweats, I was starting to feel pretty grubby.

Getting so used to dealing with the drains that I hardly think about it anymore. I'll have them in until at least the 14th. That feels like a long time, but the doctors were hesitant to have me come back this coming week since it's a long drive for me. If I came back and it was too soon to remove the drains, I'd be making the trip for nothing.

It's good to hear everyone doing pretty well with rads and the Herceptin-only infusions, seemingly. I hope things continue in that vein. Onward and upward!

I'm curious--did anyone have issues with an itchy rash on their skin around the drain line site? I can't tell if it's chafing from the velcro-able band inside my camisole, or something I should be concerned about. I have a little rash on the non-surgical side, too, around where I found an electrode pad still stuck to my skin.

Thanks, Andra! I'm wondering if I might be reacting to the adhesive....

Gabriele - I'm very impatient too. Want everything to be better NOW. Especially my muscles and their recovery from exercise, and the all-over stiffness every morning. So nice your drains were out early! I likely drained a long time because of how much activity I was still doing (but within what I was allowed to do). I know someone else who did too much and had a drain in for 3 weeks! I think drains here in the US are half-pint size (my guess) - I can't remember how many ml they held.

Meara - how are you feeling today? And...how is the rash?

I'm already getting darker skin from the rads. Starts out pink, then becomes more tan. Long way to go....fingers crossed my skin holds up. Still having some emotional issues too - soooo up and down. I'm not interacting that well with my partner the past 2 weeks - since getting here. I keep wondering how he is with all this. It can't be easy for him to look at me (a bald, eyebrow-less, breast-less woman). He says he is so happy that I am here with him and how much he loves me...but still I feel weird...I think he is a little annoyed by me/my situation. Not good putting it into words. Maybe I'm projecting onto him. I feel so lucky and fortunate to have him in my life and wonder if my luck is going to run out...like ending up with cancer.

I'd better get back to work...

love and hugs to you all! xoxoxo

Wow Meara - you summed up the relationship struggle well. He thinks I should talk to a therapist. The two times in my life I've gone (in my early 20s and a few years ago), both therapists ended up telling me after a few visits that really don't need to be there...that I have great and constructive ways of coping and everything I am going through/experiencing mentally and emotionally is normal. Since cancer is a new issue, I'll consider going again a few times. I think my attitude toward it is generally great - I am still really living life...cancer hasn't slowed me down much (still doing all the things I love - though not as well, much, or often)....but cancer still does suck! I feel like I'm still me, yet I'm so different at the same time. ugh! Just tired of thinking about cancer and not knowing my future. Then again...do we ever really know our futures? Could be killed any day at any time in an accident, but people don't really think about that much I guess. Work is a big distraction when I am physically at work, but now I'm working from home and it isn't the same level of distraction.

One of my drains wasn't draining much, so they removed it and found it had a clot...and that was why it seemed like it wasn't draining. Of course, once it is out, it stays out. Hope yours are truly low draining and can come out early!

I slept in bed on my back with drains and never rolled over onto them. As soon as one was out, I started sleeping on that side again. I'm headed toward that with rads - I can see how very soon I won't be able to sleep on my left side as my skin becomes more sore.

Glad you are doing well!!

- xo

Hi everyone! Has anyone else been given Zometa with their infusions? My doctor recommended it for bone strength and preventing bone metastasis, and I got my first one yesterday along with Herceptin and Perjeta. I got so achy and flu-y feeling overnight and now I can barely get out of bed. I know it's just temporary, but I didn't really expect this. I managed six Neulasta injections with not one side effect, but the Zometa has really thrown me for a loop. Anyone else have this experience? Somehow I am going to have to pull myself out of bed to get to my radiation appointment in about an hour.

Hi everyone,

Wow, talk about a roller coaster of a morning! So, as of about 11:30 last night, I knew I wasn't going to be able to go in to get my drains removed today--at least not by the criteria I was given, that the drainage has to be < 25 ml per day for two days. For whatever reason yesterday, my drainage output increased as the day went on, and I was well over the <25 ml in 24 hours mark. I was also having more discomfort. It almost feels like some areas that had been completely numb since surgery were starting to have a little sensation. Anyway, I was sad this morning to have to call Stanford and let them know that it looked like the drains weren't ready to come out.

BUT, when I went into my online account to get the correct number to call, I saw that there was a new test result there--and it was the report from the final pathology from the tissue taken in my mastectomy/lymphectomy. And the test results, per the report, were exactly what I was hoping for. Negative for active cancer in the removed IDC tumor, negative for active cancer in the lymph nodes! The DCIS showed "microscopic areas of treated high-grade ductal carcinoma", but that's to be expected, as I was told the chemo can't get to the in situ cancer, since it's contained in the ducts and the chemo travels through the bloodstream. Also, they apparently took 19 lymph nodes, which was a lot more than I would have expected. There was evidence in several of them of small areas of scarring indicative of prior cancer involvement, but all were negative for active carcinoma.

I feel like I can finally breathe again. I don't think I had even realized how intensely anxious I was about the final pathology report until this morning, because as soon as I read it, I burst into tears of relief and happiness.

My husband thought perhaps we shouldn't put the news out there yet to family and friends--not until we meet with the doctor next week to officially review the results. It's a little superstitious, but I agreed. It's not as though there's anything ambiguous-seeming in the report, but somehow, hearing it from my doctor does seem important and more official. Yet I just had to share the good news with someone, so I figured I'd share it here.

DurhamGirl: I haven't started my Herceptin-only infusions yet, and had not yet heard about Zometa. It sounds a lot like Neulasta in terms of the effects. I'm sorry that the SEs are hitting you so hard! I'm kind of amazed that the Neulasta never affected you too much; that stuff really knocked me for a loop. I'll cross fingers that the Zometa effects subside for you. Good luck on your continued rads!

Sending out positive vibes to one and all today. xoxo

--Meara

biscuits: Thank you for the good thoughts! And I do definitely intend to celebrate asap--as soon as these drains are out and I'm off pain meds, I think some champagne and sushi are in my future. ;-)

Another quick note--my MO's office called a little while ago, and now I'm scheduled for my first Herceptin-only infusion on Monday afternoon. Boo. I haven't exactly missed the infusions. But at least it's just one drug, one hour, and not as brutal on the SE's. And hey, if continuing on with the Herceptin is additional insurance, I guess I shouldn't complain.

Hooray Meara - That is a fantastic pathology report - great news!! It makes me excited to think about how chemo killed your cancer cells....and in all of us! Also makes me wonder if radiation is overkill....but I will follow what is recommended for me. I went and found my drain log from September - I was draining 50-70 mls each side for the first week (by day 3 I was out walking/hiking at least 6 miles/day which surely contributed to the flow), then the right dropped quickly down to 25 but later found it had a clot when it was removed at 10 days. The Left (cancer side) output never dropped below 35ml, but they removed it at 2 weeks anyway. Did you get a nerve block/epidural for the surgery? It can take days to completely wear off.

Thanks Jedrik! I won't be able to bring myself to use any cold packs or ice...I'm so cold most of the time - except during hot flashes - that I have an aversion to cold. Using the cold packs on my hands and feet during chemo makes me want to avoid it even more. I'm getting pretty sun-burnt looking now in the entire radiation field, but thankfully it doesn't hurt (yet). Glad to get two days off from it every weekend.

Rough day here. I was doing well last week physically and thought I was getting better/recovering from the chemo but this week my muscles are not cooperating again. So freaking stiff today, sore painful muscles, and coupled with hip and knee joint pain. Discouraging. I also had computer problems and spent much of the afternoon troubleshooting it along with a keyboard that burned out. I borrowed one until I can get a new one delivered.

My head henna is starting to fade a little. I can easily take it completely down if I wanted too. There is a patch I accidentally rubbed off. I think I'm going to get it done again next week. I have a lot of super soft translucent fuzz coming in, but it isn't even, so I will keep it buzzed down to a few millimeters until I get some growth in the front by my hairline.

- xo

I don't know if other people saw it today, but there was a headline announcing a study of a combination therapy for treating HER2+ cancer specifically--they used Lapatinib in combination with Herceptin with HER2+ women who had just been diagnosed but had not yet had surgery. They looked at the effect of that combination of drugs in just the 11-day period between diagnosis and surgery, and found that about 25% had significant tumor shrinkage in that 11 days--and about 11% had a complete pathological response! As in, no more cancer!! Without ANY chemo; just those two drugs!!

These findings are so exciting--these leaps forward science is making daily with targeted drugs and immunotherapies. It's not unreasonable to imagine that, in our lifetimes, if we ever do have to face this monster again, the options for us could be so much less invasive and debilitating--and still extremely effective.

Andra: I was not given a block. I remember that when I was getting prepped, one of the nurses thought I was going to be getting a block, and then a little while later he said that my onc surgeon had said I wouldn't need one. I have been feeling more discomfort in the past day or so--presumably from the tissue expander. I don't really feel it when I'm sitting, but when I stand and walk, it feels heavy, like something's pulling or tugging painfully. Also there is a lot of bruising and discoloration now on the underside of the removed breast. I sent my plastic surgeon's office a note and a photo of it today--just want to make sure it's within normal bounds. I don't see any sign of infection, and I was warned that the expander would bring additional discomfort. I stopped taking the painkillers, too...maybe too soon.

I'm sorry you've had such a rough day. I know the muscle issues are particularly discouraging, and computer problems anytime are so aggravating!

I hope you do the head henna again--it looks so cool! I had my husband shave my head again earlier this week--I think for the last time. I think I'm going to let whatever's growing grow now and cross my fingers it starts to look like real hair eventually. ;-)

Good night and all the best to everyone!

Kimmer: Thank you! I can't even describe how much reading that report has helped my mood. I was feeling a bit depressed and anxious before it landed.

Andra: Thanks--I hope the pain eases up soon, too. Getting tired of being this immobile. I can get up and move around but can't handle anything strenuous right now. Of course, it's been raining buckets for most of this week, too, so I'm not sure I'd be out there power-walking even if I felt up to it. ;-)

Glad the Ibuprofen before bedtime seems to have helped your legs. Hope you have a great Friday!

Hooray Meara for some real hair/stubble coming in!! I'm still waiting and hoping. Lots of light fuzz here, so I'm not willing to grow that out yet. Going for henna round 2 on Wednesday. How are you feeling today? I hope the drains aren't giving your grief and the pain from the expanders has eased.

I snowboarded for half a day yesterday. It was all my legs could handle, but I'll take it! I had to get up from my toe edge using my arms...no way I could get up from heel edge in a squat. I tried once and needed help. Thankfully my friends understood and kept an eye on me for when I needed some help. We also did mostly groomed trails, not all mogul fields and in the trees like we usually do.

Week three of radiation starts today. My sunburn looks a little better today (turning to tan) but I'm still concerned my skin won't hold up. 6-7 weeks is a lot.

I think I'm doing better mentally/emotionally the past few days.

love and hugs...

Andra xo

Hi everyone!

Ag23: I can't say that I experienced any rash, but I can say that some SEs were at their worst after the end of chemo. It seems logical that the cumulative effect of the drugs building up in one's system can show up as worse SEs, or even new SEs, at the very end. I hope you're able to get answers via your PCP and/or MO.

Andra: Yay for snowboarding--half a day of that is still pretty amazing, and great exercise! I'm glad you got to do it. And yay for more henna this week! Now I kind of wish I'd done something as badass with my naked scalp as you have. I was never that comfortable going bald in public, but maybe I'd have been braver with a cool henna design going on. Still, I'm happy to see my stubble showing up. The hard part will be having patience, waiting for it to look like more than just 5 o'clock shadow.

I went in for my appointments yesterday and discussed the final pathology report with my onc surgeon and MO--and I'm thrilled to say that the results had even more positive implications than I realized. They confirmed my complete pathological response to treatment, and my surgeon said that it's actually fairly unusual to see a complete response from chemo in the lymph nodes when cancer has spread there. She said that my cancer being completely eradicated in my lymph nodes puts me on the same footing, in terms of long-term risk, with someone who has never had cancer. Also she and my MO concurred that there's no compelling reason for me to have radiation. Because I did opt for mastectomy and because the lymph nodes are clear, there isn't a clear benefit to doing radiation. This is exciting news because I'll be able to move to reconstruction a little sooner. Because I have to continue on with Herceptin, my MO recommended I hold off on the second surgery until after my next echocardiogram (I'll need to have them every 3 months because of continuing with the Herceptin). But even so, that could make my target timing for reconstruction more like June than September. Oh, and I heard for the first time today that I'm going to be put on Tamoxifen.

Oh, I still have my drains, though. I'm seeing my plastic surgeon today and hopefully he'll agree to at least pull the unproductive drain today. The other one, I don't know. It's still catching a fair amount of fluid every day and I suspect my plastic surgeon will want to wait until that slows before pulling it. I hope I'm wrong about that, though...would love to be rid of these things!

I hope everyone is having a good week. xoxo