Starting Chemo in Nov 2016

my cancer is wide spread in my abdomen and not under control yet. Need to get tumor marker down and whatever is compressing my right ureter shrunk or gone. Tired of peeing in a bag and chronic kidney infection. I just can't wrap my head around it yet

Looks like you figured out the signature part. Your DX and chemo is showing now. And of course you can join the fb group. I'll PM you.

Just came across this group! So happy to see others here who started chemo therapy when I did so I can read about your experiences. I'm so in need of connecting with others going through something similar to what I am experiencing. I thought I'd introduce myself.

I am a 43 year old mother of 2, from Massachusetts in the U.S. Had my very first mammogram in July, resulting in followup tests, and diagnosis of invasive ductal carcinoma of the right breast, Stage I (I think there is an A or B after that, but I can't remember at the moment), tumor just over 1cm, HER2-, negative for all 28 genetic mutations. Biopsy showed aggressive cancer cells.

I underwent a lumpectomy on 10/13/16 that went well, sentinel nodes that were removed tested negative for cancer. The only odd thing was that they found a small lymph node oddly placed in the tissue right next to my tumor that hadn't shown up on any images, and that tested positive for cancer - meaning that technically cancer could have started to get into the blood stream. (I had breast reduction surgery in 2011, so wondering it that oddly placed lymph node ended up there from being moved around during that breast reconstruct.) Ended up having negative estrogen receptors ER-. My Oncotype DX test performed on my tumor came back pretty high, 65 I think - my cancer was aggressive for this type of cancer. So all of these factors lead to doctors recommending aggressive treatment to reduce the chance of recurrence.

Started chemo on November 23, 2016 - CYTOXAN & DOXOrubicin every 2 weeks for 4 treatments (accompanied by DECADRON, EMEND, ALOXI at each treatment). I have had a really difficult time with these medications. Started with 10 days of symptoms & discomfort (more than a week mostly in bed), then 4 good days before next treatment. The good days became fewer as time went on, this past 2 weeks I had no actual good days. The anti-nausea infusions have caused lots of trouble with headaches. I've been able to do very little of my normal activities, which stinks because I have 2 little girls to take care of, so my dear husband is having to manage an awful lot without my help. Going to be joining a support group in the next few weeks.

Today I started the next phase of treatment, no more of the other meds. This will be Taxol for 12 weeks, once a week (accompanied by DECADRON, Benadryl, and Pepcid at each treatment to manage possible allergic reactions). This phase of treatment is supposed to be less invasive and carry less of those really unpleasant symptoms that I've been experiencing. Fingers crossed!

After chemo ends, I start radiation 2 weeks later 5 days a week for 6 1/2 weeks. Then 10 years of hormones after that.

That's most of my story. Sound familiar to anyone else? Looking forward to reading through your posts. Thank you for having me!

Welcome New England and Plantchild! Of course you guys are welcome to join our Facebook group....I can post the link later when I am not at work (cant' go on FB here) unless someone else can get the web address and post it for you.

We have a great group of ladies here!!!

Diana I"m so sorry to hear you have to be on the chemo longer then you expected...I hope they can get it under control before your summer vacation plans...think positive!!

Welcome, New England and plantchild!

New England, our stories are very similar. My oncotype score was 51. I had my second dose dense taxol last week. No nausea, just heartburn and some bone pain. I think the weekly taxol may be a bit easier- several of the ladies on here are doing weekly.

Dianarose-hope you get some answers and get your tumor markers down!

I hope everyone else is feeling well!

Have a good day,

Kelly

I'M DONE, I'M DONE, I"M DONE!!! I want to shout it from the rooftops. I rang that bell so hard, and cried tears of relief. Just took off my last cold cap after having it on for the past 7 hours. Just get me through the next week of side effects and I know I'll be on my way to feeling more like myself every week. I read RBC will regenerate after 6-8 weeks so hopefully in 8 weeks I'll have my energy and taste back to go out and celebrate!

Crats Pam! Your post made me smile.

Welcome New England!

How are you weekly Taxol people doing? I had my first last Friday, and it seems to be very different SE's. Much less nausea so no constipation, but now I am having the opposite problem. Also, much more pain in my lower half. Seems weird that I am having more issues with the Taxol than the AC. Maybe it's just the cumulative effects of all this poison. Anyway, I can't wait for these 10 more weeks to pass. I go for an ultrasound tomorrow to see if my tumor has shrunk any. Fingers crossed. The good news is all my heart tests came back fine. So onward and upward!

Have a great evening ladies

For those of you who have already started Taxol, how long do the infusions usually take? I've heard it takes longer than A/C. I start on Monday morning and I'm just trying to plan my day. Thanks!!!

I start Taxotere tomorrow and they told me to plan on about 3- 3 1/2 hours total....I will see my MO too but they do that during my treatment so it saves some time.

I am glad you all have mentioned the benadryl. It almost always knocks me out. I was hoping to be able to drink myself, but I will have someone on hand for at least the first treatment. I will call the office and see what other premeds I'll receive too. I've had to have blood thinner each time to unclog my port so that is an extra 45 minutes each time too.

Hello NewEnglandChic,

We don't have the same type cancer, but I was Stage2 and had a (3.5cm) lumpectomy on my right breast. I had my 5th weekly taxol treatment today. I have been very lucky with taxol. No nausea at all. The only SEs I experience are from the drugs given to me on treatment day and also from a prescription for acid reflux that developed while I was doing AC. Weening myself off of that one now!! I have been experiencing intermittent pains (jaw, neck, lower legs and feet, but they go away as fast as they came. Strange...

When all goes well my taxol treatments last two hours. Today I showed up early as directed and wasn't seen by the NP until 30 minutes after my scheduled appointment time. Um, she might have gotten an earful. :-)

I hope your taxol treatments go just as smoothly, if not smoother for you!!

amw5, haven't heard from you in a bit, hope all is well!!

Sorella??? You still out there? How are you doing??

Hello! Thanks to all for the welcome. I see a few of you talk about Onco score? What exactly is it ans Is this something that the Dr tells you? If so I will have to ask mine on Monday when I go for my appointment. Also for those that are on taxotere how are you dealing with the heart burn?!? They put me on a perscription of ompreazole 40 mg that worked for a little but now its bad again.....I have it all time. What are you all using???

Thanks! Kathy

I don't do facebook and I miss those who've switched. I'm grateful for everyone who is still on this forum. I've been reading but not posting for about a week. I find Taxol easier than AC but I am still experiencing a brain fog, or a disconnectedness that makes it hard for me to concentrate. I can't drive, for instance. I also have some finger and toe numbness, swelling around the ankles and feet. I'm concentrating on keeping good circulation to counteract that and I am taking a small amount of L-Glutamine (500mg). I've been keeping up with the good news of those who've completed their regimens and I really look forward to reading how you proceed with next steps and I know some have been facing side effects or treatment news that was less positive than hoped. I have each of you in my heart, everyday.

Last week my MO decided to switch me to a port because my veins starting showing signs of stress. I had the port placement on Tuesday and they planned to use it Wednesday for my 3rd Taxol infusion but after 3 nurses made 5 attempts to access it they switched back to an IV. They said I had too much tissue swelling to access the port. Next Wednesday my surgeon will do the port access and after that the healing should be sufficient that it will go smoothly.

Hi Plantchild! For heartburn, my MO recommended Prilosec OTC and Pepcid AC. I also take Gas-X. I had no idea that the excess stomach acid and gas could be so painful! The Prilosec and Pepcid help with the heartburn, but I still can't drink carbonated beverages without some discomfort. I miss my diet Coke!

I'm glad it's shrinking Hope! That's the one problem with doing this chemo after surgery...I have no way of gauging if he's doing what it's suppose to do.