Anyone.Starting Chemo in October 2016?

bravepoint

VLH - Yes, more hair is shockingly white too. My DH assures me that there are some darker bits coming in but I think he's just saying that to cheer me up. I don't think my hair has grown at all in the past few weeks. It's still about half an inch all over and spiky on top.

Gail

KLNiss

CONNIE!!!!! Congratulations - you must "feel" so good. I am very happy for you.

Regarding the hair growth - I am 6 weeks PFC and have about an inch of white hair. No hair in very front. Makes for a funny hairdo.

K

VLH

My hair is nowhere near 1/2 inch yet. :-(

Connie, how is your back? During my doomed radiation mapping attempt, they had my legs pointed right, upper torso listing left and my head pointed right. It didn't hurt at the time, but my herniated disc has been painful since then. After months of being a semi-invalid, I've been more active the past couple of weeks so that's probably contributing to the pain.

Lyn

Connie1230

If I'm very careful, I don't have much back pain. I start therapy Tuesday. I can't say I'm looking forward to that but hope it helps.

I have obviously overdone this week. I went to Mayo both Mon and Tues. Wed., my sister came (staying with my parents who live about 2 blocks away) and we went to the discount mall...just a couple of stores. Yest., we went to the beach (15 min. away). Today I haven't moved....and suspect tomorrow may be the same. I am just totally worn out. I hate feeling like this.

I also am constantly freezing. I am bundled up like it's freezing weather outside and thankfully took a sweatshirt to the beach yesterday or I couldn't have hacked it. My sister walked in today in her tank top and shorts and I'm in heavy winter pjs, a heavy robe and 2 blankets over me. I sure didn't know this was a SE.

I'm hoping some of the side effects start wearing off as the chemo gets out of my system

VLH

Guys luck with the PT, Connie. I wasn't typically cold except during the actual infusion.

Lyn

Reina_de_los_changos

Yes, I lost my taste buds! So annoying! I finished chemo 7 weeks ago, and am slowly beginning to taste things again. I would say it's almost back to normal. Hang in there!

KLNiss

Hi ladies - have I not been getting posts or are we not posting? I haven't in awhile. I started RADs yesterday. How is everyone doing?

K

bravepoint

KLNiss - I am doing OK. I have had 16 of 29 (25 + 4 boosts) rads. My skin is starting to turn pink and I have pin prick sized red dots on my right breast. The nipple is really tender on that side too. Sigh.....

Hope your rads go well!

VLH

I think most folks moved to a radiation topic, K. As for me, I'm trying to get insurance approval for breast reduction surgery before getting radiation. I'm feeling much better. I have an appointment to meet with a PA to discuss my required survivorship plan. I'm waiting for results on my first biomarker test and a call from the hospital to set up a chest CT since a lesion showed up in my lung when I had my baseline scan back in September.

Good luck with your Rads!

Sorry about the ouchy nipple, Bravepoint. :-(

Lyn

VLH

My tumor marker treat results were in the normal range and my red blood cell count squeaked into the normal range for the first time in months. The plastic surgeon has sent my request for breast reduction surgery prior to the insurance company. I'll call them in a week to see if the pre-authorization can be expedited since waiting is delaying cancer treatment vs. simply wanting to reduce neck and back pain. Since the insurance companies require a certain number of grams to be removed to justify paying for reduction, but I'm willing to trade wearing a padded bra for the first time since 8th grade for less tissue to be radiated, not having a breast "fold" all the way down to my waist that could get nasty during radiation and getting super-sized tissue samples to check for cancer. The surgeon is also willing to remove my port so that would save me another procedure.

I hope everyone is doing well!

Lyn

deemendoza

hello all, it's been awhile glad to read all the post.

Connie, yippy you're done!!! That must be a great feeling.

Here's a brief update on me. I FINALLY had surgery on May 9th. (Recurrent BC after 8 years) I had a total/complete mastectomy with complete removal of lymph nodes in the anatomic area. The previous implant and capsule was removed both tested negative for malignancy. They removed 38 lymph nodes and 35 tested positive for cancer. I'm a bit devastated as I was hoping the chemo had worked.

Recurrent BC isn't staged however if this had been my 1st dx I would be at a stage 3

Praying for all

VLH

Oh, Dee, how scary! I'm so sorry that the chemo wasn't successful. What do the doctors recommend going forward? Are there any clinical trials that might be appropriate?

Lyn

bravepoint

Lyn - Sounds things are moving forward. If you're anything like me, you're more than ready to be done with all of this. My right boob is very tender and red as is most of my upper right quadrant. I've done 24/25 rads then 4 boosts. I'm applying cream like crazy praying that my skin doesn't start cracking. The RT told me that skin reactions usually peak one week post treatment so the worst is yet to come.... I was not a happy camper when I heard that.

Dee - So sorry to hear that the chemo didn't work. Will they try another protocol?

deemendoza

maybe I'm just being skeptical but I really thought it worked. I originally went in because I felt a swollen lymph node under my axilla, that's what was biopsied and tested positive for cancer. By the 2nd treatment even the oncologist had a hard time feeling them. Maybe it didn't work as they wanted it to?

Currently I'm on Lupron to supress my ovaries "anti cancer regimen" I met with my on Thursday to discuss other options along with radiation which had already been discussed prior to my path report.

VLH

Gosh, Dee, I hope the radiation and hormonal therapy prove effective. Let us know what your oncologist has to say.

Gail / Bravepoint, I hope that your skin doesn't get any worse. I know that some ladies found the damage was at its worst a week or two after treatment ends, which seems very unfair. Ugh!

I called the insurance company Friday to see if approval for my breast reduction surgery could be expedited given that it's delaying radiation. They said it could be, but the plastic surgeon had to submit a special form indicating the surgery was urgent. The plastic surgeon wasn't comfortable doing that because the actual reduction isn't urgent so she couldn't certify that my case met the strict definition laid out on the insurance form. Gotta love the logic there! The plastic surgeon l mentioned the radiation in her request for approval and the employee included it in her notes so one hopes the request will progress quickly and end in approval.

Lyn

bravepoint

VLH - I know! It is very unfair that things get worse after you are done. 1 more regular treatment and then 4 boosts to go. How long after surgery will you have to wait for radiation to start? You will have to be fully healed!

VLH

The radiation oncologist thought three weeks, but the plastic surgeon said six weeks. I hate to wait so darned long, but with umpteen delays with my chemotherapy, I don't know that it would make any difference. Today marks one year since my diagnosis.

Lyn

VLH

It's been very quiet here, which I'm assuming is good news.

I finally had my reduction surgery and my chemo port removed. No cancer was found in the pathology report so that was welcome news. Several weeks of healing, then on to radiation.

I hope everyone is doing well.

Lyn

Luwusu

glad to hear your surgery went okay. I have five more days of radiation (total of 33) and am looking forward to being done. Then, only Herceptin every three weeks until Feb. I hope your healing isn't too bad, and then you're on to radiation. I'm looking forward to having my port removed but that won't be till Feb. that's okay.

chickdudefood

Hi everybody,

Just thought I'd share that I had my bilateral mastectomy on Wednesday and came home yesterday afternoon. I'm not experiencing much pain at all and dealing with the drains is annoying, but this too shall pass. The mastectomies were because of finding I am BRCA2 positive, so since I last posted I've also had the ovaries and fallopian tubes removed. I'd had a lumpectomy way back on October, before the BRCA results were in, and I'm kind of glad I had to wait this long for the mastectomy surgery--it gave me plenty of time to get used to the idea of having no breasts and to really get to a place of peace with my decision not to have reconstruction. With any luck, the pathology report will come back clear and I'll be able to move forward into whatever the new normal will be.

I'm still experiencing neuropathy from the chemo, but I seem to have adjusted well to the aromatase inhibitor, which I started taking in April after rads.

My daughter is up from NYC to take care of me for a week, but I don't really have that much that needs to be taken care of, so we're hanging out and planning lots of very important self-care including pedicures, and I may even get these new silver hairs dyed to brown so that I can look more like myself to myself.

It's been quite a year for all of us. I know I've changed in significant ways and I may never be as buoyant and optimistic about life as I was before cancer. It will be awhile before I can get back to my yoga practice and teaching, and that's where I am happiest and at my best. But what an amazing feeling, to have so much of this awful year behind me and the sense that perhaps things will, maybe, get better from here.

I so love all of you. Even when I wasn't posting much, I was following, and I so admire everyone on this board. You are all badass rockstars!

Much love,

Kate

VLH

Luwusu, are you finding the Herceptin quite tolerable? Most ladies don't seem to find it as problematic in terms of side effects. How's the radiation been? I hate to subject my new breast to the radiation, but will reluctantly do so. I know that you'll be SOOOO glad when your treatments are complete.

Oh Kate, you've been through so much with the blasted cancering. I'd say that YOU are the badass rockstar! I been unpleasantly surprised by the iron bra feeling after my reduction surgery. Wonder how long it lasts? For some reason, I associated that with the tissue expanders and going with a lumpectomy and reduction meant I could avoid it. Do you have that sensation? How great that your daughter can help during your post surgical period. I have been quite pleased with my range of motion although I'm being careful not to test the limits and accidentally tear something and cause problems. I think it's great that more women are becoming comfortable with no reconstruction. Having been buxom since junior high, that would be a tough one for me personally; however, I've seen women with more athletic physiques who look gorgeous to me remaining flat. Best of luck with your pathology reports.

My neuropathy has worsened the past week for no apparent reason. I'm wondering if perhaps it has something to do with the pain medications, which I'm weaning off of, or simply being less active immediately following surgery. I sometimes wish I'd observed my original instinct to skip chemo. Statistically, my chemo only offered a 6% benefit in terms of survival, but I 100% have neuropathy in my toes, soles of my feet and my dominant right hand plus the lymphedema in my left arm. The issue I encountered with the racing heart, shortness of breath and poor endurance essentially left me an invalid for months and I still haven't regained much of my stamina. It's such a difficult decision. I hope that research can move rapidly toward finding treatments that don't have such daunting side effects. I comfort myself by attributing my first clear mammogram and lack of growth in the small lesions in my lungs to enduring the chemo. Knowing that only radiation awaits is very exciting.

Good to hear from you, Ladies!

Lyn

Luwusu

Lyn, radiation hasn't been horrible. I feel drowsy a lot. I only have a few sessions left, so Lefty is quite red, itchy and somewhat sore, but rads have been infinitely easier than chemo. I have used Aquafor and Pure Aloe (no alcohol!) since the beginning of radiation.

Herceptin has not been a problem at all. No side effects that I can discern.

I do still have neuropathy in my feet but not a big deal. I notice it only when I'm laying in bed. I think it will eventually leave. Hands and fingers back to normal.

Nancie

VLH

ARRRGH, just lost my entire note, but am glad that radiation hasn't been too bad and that the neuropathy let up in the hands. How many treatments do you have left?

Lyn

lidabit

hello all,

I know it has been quite some time, but I just finishing my last Herceptin today! I was talking to my oncologist today about terminology when it comes to cancer and how I hate the word battle, because of the concept of winners and losers. I think a more appropriate term is slog. This last year has been a slog, everyone here has made it tooperable. Thank you all!

Abracadabra

lidabit - Great news! It makes my day to hear that someone has slogged their way to the end of treatment (totally agree with your slog term). Best wishes!

bravepoint

lidabit - It is definitely a slog. I was one of the last in the group to finish chemo which lasted over 6 months..... I still am experiencing numbness in my left foot and a painful tongue with few active taste buds. Hoping it isn't permanent!

lidabit

Bravepoint - I am sorry to hear sending healing thoughts

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bravepoint

Thanks lidabit!

Luwusu

I am still getting Herceptin till February. I have some side effects still- mild neuropathy in hands and feet, numbness in area where lymph nodes were removed, and haven't regained all my energy. It has been a long year, but here we all are. I think of it as an chapter in my book of life. Which certainly gets more interesting the older I get! Wishing you all are at good places .nancie

VLH

Congratulations, Lidabit!

Yup, "slogging" pretty much sums it up!

Bummer, Bravepoint! I feel like a champion "slogger," too, finally finishing radiation two weeks ago. I would be more excited if not for the neuropathy in both feet and my dominant hand and the stupid lymphedema. Since I've met my catastrophic out-of-pocket maximum for the year, I figure I'd best make arrangements to pursue getting a pump and consider PT, but I really, REALLY want a break from cancering...shoot, from adulting in general for a few months. What say you, ladies?

Lyn