November 2014 Starting Chemo Crew

I had my first of 12 Taxol injections on Thursday. Felt great Friday because of the steroids in Kytril, however severe constipation is back. Are any of you taking Taxol without anti-nausea meds? I thought Taxol didn't cause nausea. I'd rather have nausea than constipation at this point. I'm considering insisting on no Kytrilonger next week.

I am not taking nausea meds with Taxol. I took 5 decadron (steroid) night before. One hour before taxol I took 5 decadron, 1 zyertec, and  1 40mg of Pepcid. I only have to do this for the first 2 infusions for allergic reaction. After 2 weeks I don't have to take the steroids any more. I hate them. They make me an emotional, crazy mess. I would rather be tired than crazy.

I had my first taxol on the 15th. Tired on Friday, icky feeling Saturday, and only mild tired and achy today! Beats the hell out of AC for sure.

Hello Ladies! I haven't been here for almost a month so... Merry Christmas and happy new year to all of you! Hoping that by the end of this year all of this craziness is just a vague reminder of how strong we all are!!!

Sooo... there was a lot of action while I was gone here so I won't even try to respond to everyone cause it would probably get confusing...

I had my port put in on dec 21st. I went smoothly but to be completely honest, I have the scar SO much... but there is nothing I can do about it so I won't stress...

Right after Xmas I had chemo number 4 and it wen't as ok as chemos usually are... The usual side effects were there but got better just in time for my new years NYC trip! I have to say, it was the right thing to do, not to cancel the trip. I needed the distraction and even though it was SO sold I loved being out of the "cancer world" and just having fun with my friends! I stayed for almost 3 weeks, came back, and on Friday had chemo number 5! Just one more to go, I can't believe it!

Today I am kind of in a bad mood but I guess it is just the chock of coming back from vacations to real life mixed with annoying SE... I'm sure I'll be better by tomorrow morning! I read in the last pages someone (lots of you actually) saying that you just want your normal life back...guess that is what I am feeling today...

I kept you all on my thoughts while I was away! Hope you are all doing well!

I'll be back to posting here more often and being more of an active member now that I'm back!

Lots of love to all of you!!!

Erica and Marsela, welcome back and so nice to hear from you. People seem to come and go on this page and I wonder how they are doing. Lots of us migrated over to the Facebook page Bonnie set up for us, and I may not even track all the identities (TallyLassie is Teri Cleeland on Facebook), but it is nice to get updates. I figure that those who have dropped out are doing well and no longer need the fellowship these pages provide me. At least that's what I hope.

Marcela, I'm so glad your trip to NYC went well, and glad you are almost done with chemo. I've felt a little letdown after the holidays when I was getting so many cards in the mail and there were other nice distractions, but the slow pace is also nice.

Erica, our discussion board leader, I'm so glad to hear from you again as I was worried about you. I'm so sorry to hear about the shots you have to give yourself but glad they've got a handle on that side effect. And congratulations on your last Chemo today!!! I also appreciate you sharing your experience on deciding on how to go with your breast surgery. I'm still weighing my choices, and still seeing doctors about narrowing the choices (I'm looking at mid-March for surgery). For instance, like you, I want a one-and-done on mastectomy and reconstruction, but I see a radiation oncologist this week to help determine whether I'll need radiation before reconstruction. I really hope not. Getting my chemo first gives me lots of time to weigh options. I'm hoping for DIEP reconstruction and the plastic surgeon told me I only have enough tissue for a single, so that's driving my choice to just get the one done. I did a genetic test and don't have the results yet, so that will help me decide on one or both as well. At 58 years old, I figure I have fewer years for the other to go bad on me, and the DIEP surgery looks pretty serious. It's almost more difficult to have the options available, though I'm grateful. I'm also told that I can always decide later, even much later, to do a prophylactic mastectomy on the other side and have it covered by insurance, which gives me some comfort.

I had Chemo #4 out of 6 last week and I'm pulling out of the worst of the side effects today. Compared to many, I can't really complain as I've had no really dramatic side effects other than a horrible burning rash on my hands that they've figured out how to prevent with steroids. I love this forum for communicating with others in the same boat, literally from around the world.

Keep in touch, everyone, and good luck as we continue this journey together!

I haven't been on this page for a while since I migrated to the Facebook page. It's good to reconnect with this group and see what is going on with everybody though I know there are some duplicates.

I completed my AC treatments in the December and had my fifth Taxol infusion yesterday. For the most part the Taxol treatment has been easier however I've had sinus problems and/or colds and nose bleeding which for a couple of weeks of caused way more fatigued than I expected. My oncologist suggested I get back on my allergy medication which seems to be helping even after a few days.also I'm using a humidifier.

Best is I have much less brain fog, less dry mouth and more normal taste buds. I do have constipation and have been using Senna S. I'm trying to transition to a less dosage of that adding more natural fiber to my diet. I had to move away from that during AC because it was causing way too much gas and caused other problems.

This week I've started to have neuropathy symptoms but they aren't impacting any major life activities at this point. The doctor may reduce my taxol dosage to try to prevent it from getting worse.

Now that I'm on the homestretch of the chemo I've started to think about my surgery. Currently I plan have a lumpectomy on the left breast with the tumor (which is shrinking as well as the lymph node). This is based on different factors including my age (I'll be 60 next month) and the recommendations of my doctors and the tumor board at the hospital. I do not have any family history of breast cancer so they did not do the BRCA test. They've also asked me to consider participating in a clinical trial that relates to amount of lymph node removal and/or radiation treatment depending on the results a pathology test on sentinole lmyph node tissue they will do during the surgery. At this point I am leaning towards participating.

Best wishes to all.

Those who aren't on Facebook, or who might rather reply here, I just posted this there and wonder what you think:

"Secret Group" Friends: A philosophical question. How are you handling who to tell about your diagnosis? I have worked and lived in several states over my career and have maintained long distance friendships with many, to different degrees. When I was diagnosed, I chose to tell a relatively small number of close friends and family. Yet, if you look at my Facebook page or this year's holiday cards, you would not know that I have cancer. As I get farther into this (was diagnosed in late October), I find I'm communicating to two different lists, those who know and those who don't. That includes some former employees who I talk to on the phone to give career advice (I'm retired), and some friends/coworkers I haven't sen in 30 years who recently (pre-diagnosis) reconnected. My plan was to reveal all when I'm through this. My prognosis is excellent, so I don't want to unnecessarily worry folks, and honestly, I don't want me to be only seen as the "person with cancer" because I feel I'm so much more than that. But I'm starting to feel kind of funny about it. Anyone else?

Chemo buddies...I'm trying to get my white blood cells up. Is it true that I can't eat or juice raw fruits and veggies? Part of me thinks that just for the nadir period.

No scans at all except the MRI that I had of breasts prior to mastectomy. What is normal for having scans? Why do some get scans prior and others not?

Hi everyone. ..my last chemo is Monday. I'm so dreading it. Every time I think about it I tear up. Mentally I'm not ready to deal with all the side effects. On a positive note...so glad it's my last one. Then radiation. I hear side effects are much less.

My original biopsy results came back as DCIS, so the only thing I had additional at that time was the MRI. The MRI was done on 9/15 and was never called by my BS with results. I was told that my appt on Oct 1 was to discuss that. The MRI showed few additional lesions which led me to mastectomy and now chemo. When I met with MO I asked about additional scans and he said that I had the MRI. In my mind the MRI did not show the positive lymph node so was it really good in detecting everything that was there? . He also stated that the scans would not show anything anyway as it was too early. Of course I always have negative in my mind and figure he is not sending me for scans as to not worry me or he isn't telling me something. My BS told me I had no cancer left, all was removed when she did mastectomy and all margins were great. Pathology report freaked me out as I had one positive lymph node out of 17. Also tumor was very agressive, 1.1 cm and showed some lymphovascular invasion. My MO said I was focusing too much on that information and gave me the two chemo treatments that I had to decide on, both being preferred regimens for Stage 2... I opted for TC regimen so that I did not have to deal with heart issues with ACT.. as I have very high blood pressure and a murmur and leaky valve. As always I continue to think positive.... even though now I am dealing with the possiblity of truncal lymphodema. Going for PT and with this tissue expander in its hard to know why they at time seem to swell up more so than other times... Seems to be too much to be going through all at once. Thanks for just letting me vent...!!!

I had several tests once diagnosed. It started with an ultrasound & mammogram which led to the initial biopsy. Then surgeon requested breast MRI to get a clearer picture of the tumor itself. That showed lymph node involvement so they did another biopsy of the lymph nodes. The surgeon and oncologist both wanted me to do genetic testing to help guide treatment. Because the MRI showed that my tumor was large (7 cm) and that the cancer had spread to the lymph nodes, the oncologist asked for a PET scan to make sure it hadn't gone any farther. For others I know who were earlier stage without clear lymph node involvement, they only did oncotype testing and possibly genetic testing. So I think it does depend a lot on the stage/grade of the initial tumor. Not every test is needed for every patient. IN my case, we decided as a team that I should do chemotherapy first. I'm so glad that we did. The extra time it has given me to really think about and research surgical options has been very helpful. I wasn't thinking clearly in the first month of diagnosis and this slowed things down a bit. Feeling the tumor shrinking has been an emotional boost as well.

Thanks all. My doctor said "ok" to juicing. This last round was tough of the body. Tomorrow starts round 4.

Dee4C, I believe I will need radiation as well. I had only the sentinel node but it had 8mm cancer in the node. So I think I am pretty sure I will be getting radiation. I am worried about that and what it will do to the reconstruction. To think after all this time with a tissue expander in going through the discomfort, that I will end up not being able to have an implant. I have my RO consult on Feb 2. Last chemo for me is Feb. 5th unless its decided that I can do 2 more cycles of the TC. MO was going to look into it and see if there would be any benefit and what the long term side effects may be of doing 4 vs 6. Were you offered 6? I asked about it as I have seen some people post about doing 6. I also fear lymphodema from the radiation..it ups your chances of getting it. I had 17 nodes taken out...thank god all were negative but that one that scars me to death. I am already seeing a PT for the swelling that I still seem to have under the arm area and chest...not sure if its lymphodema but just trying to do soomehting to make it it not happen. Since you had a mastectomy do still have any swelling or feel like your tissue expanders swells at times.?

Wow you look great!! Love the hat. Congrats on being done. My 4th and last will be Feb 5th. Hopefully my oncologist will tell me the same about the 6 treatments as your onc told you. Makes you wonder where some get their info if others are having 6 vs 4.. I always question my choices. I really need to start thinking like you. I have been trying to think positive through this whole thing, but there is always one more thing added, makes it difficult.

I am guessing that my swelling is in fact the start of lymphodema...truncal. I hope starting PT will have a positive impact on whether I do end up with a diagnosis of it and hopefully its mild and controllable. I was told that having radiation might affect having implants and the PS would discuss this with me later once I know for sure. Were you given the option of radiation or not and was did you need it because of your lymph nodes. I don't know how many cc's they need to put in me, but right now I have had only two fills.. one was at 80 cc and the other was 90 cc. Not sure what was filled during the surgery. I am a C cup...so don't know how many cc's that is. but 700 sounds like I will explode.. Can't imagine them getting anymore liquid in them..seem so tight now.

Good luck and keep me posted on your radiation and te's.

Karen