New here- just had my first infusions

I was diagnosed on Sept. 27, less than a month ago. Had a routine mammo done on Aug. 31, call back for another, biopsies done at local small hospital, received diagnosis on 9/27 and referred to Dana Farber, which is a 2-3 hour drive for us, depending uptown traffic and time of day. Went for initial consultation with a medical oncologist and surgical oncologist there, had more biopsies done, bone scan, echo, CT scan, and begin chemo at DF two days ago. A whirlwind 3 weeks. The biopsies I had done locally showed DCIS in the main tumor and IDC HER+in the lymph area. I was rebiopsied at DF and they found the main tumor had IDC also, which was actually good news because at least we now know that the main cancer caused the lymph IDC and it hasn't been caused by cancer somewhere else in my body. TMI? Probably. But how does a person tell just fragments of this story?

I had my first infusions of taxol, perjeta, and herceptin at Dana Farber two days ago. It went smoothly, and lasted 6 1/2 hours. I am on twelve weeks of chemo to begin with, with two weeks just receiving taxol, and each third week receiving all three drugs. After that, either surgery, or more but stronger chemo followed by surgery, then radiation. I will continue on the herceptin for a year. I felt great yesterday, the day after my infusions, then petered out at night, broke down, had pretty severe redness on my face, neck and chest and sadness and feeling of being overwhelmed. Guess that's all normal.

I am 62 years old. Can I tell you the things I have going for me? These help me to keep positive attitude:

1) I have a wonderful, supportive family. My husband and daughter go to every appointment with me. They, and my son will do anything for me that I need or want. Their love is what keeps me okay. I have a loving, supportive, concerned sister and sister in law, both who live far away, but will be here on the next flight if I need them.

2) I have some incredibly supportive friends, both close and far away from me. One friend calls me every day, another emails me every day, others check in often. They offer meals, transportation, hugs, encouragement, send cards, flowers

3) I have a supportive, smart, kind minister at my UU church, and a supportive church community.

4) I am retired, so don't have to worry about going to work. My husband is also retired, so he can help me in driving to Boston and everything else.

5) I live in a very beautiful area, and see mountains, changing colors, and beautiful scenery every day.

6) Did I mention my grown daughter? She is my life saver. I could never ask for more. She is intuitive, smart, loving, and kind.

7) having a great cancer facility within driving distance. I hate the waits at DF, but I love the medical people I've dealt with there so far.

So even though rough seas are ahead, I am getting by keeping the above positives in mind all the time.

What sucks so far:

1) knowing I'm going to lose my hair

2) having to tell my ten year old granddaughter - we are doing this tonight

3) the IV situation- I have always hated shots and needles. No choice now.

4) not knowing how things will be in the weeks and months coming- how bad will I feel, how incompacitated will I be?

5) the long drive weekly to DF. But I chose to go there, so I shouldn't complain.

6) having to have others be strong for me and me not being that for others.

I would love to be in touch with others who are in my situation. I will offer support, and will need it from you at times. I wish none of us we're going through this but it looks like we are. Would love some company.

THank you, Deaconlady. I wonder why some people lose their hair and some don't. I notice you weren't on Perjeta. Maybe that causes the hair loss. I think it's too much for me to hope for -not to lose my hair. I'll keep you posted

Hi Luwusu,

Thank you for such a lovely post listing your positives which has made me look at mine and there are so many.

Like you I was picked up on a routine mammo - had a mastectomy and completed 12 weeks of weekly Taxol and Herceptin. It really was not awful - the first six or seven I felt almost normal.

After that the fatigue hit big time - but the end was in sight! Finished Taxol 10 days ago and am now on Herceptin every three weeks for 9 more months.

I didn't wait to lose my hair - when it started to come out I shaved it off! I bought a good wig and I've never had so many compliments about my hair!

It is the Taxol that causes the hair loss and already a fuzz is growing back!

My grandchildren were fascinated by Granny's bald head and their mother used this to help explain how Granny is sick & the medicine makes her hair come out. We have fun after school - I let them try on my wigs ( I never wear them unless I'm going out and want to avoid the sympathetic looks from people on the street).

I honestly never felt the IV needle going in - look away and chat to the nurse about something that really interests you and it will be in before you finish your story!

The drive might tire you but I found myself full of energy after chemo for a day or sometimes two due to all the steroids they give you to prevent a bad reaction to the chemo.

People love to help others - allow them that joy!

I felt just like you. My sisters took me over and babied me. My mother said they want to - please allow them and hard as it was I did. It humbled me to do this but brought us much closer.

My husband is an invalid. Being so vulnerable myself (I'd never been ill before) helped me to understand what he must feel like and will help me be a better carer in the future.

For me the worst part of the whole experience was the fear of what was going to happen as the days and weeks went on. It is scary and everyone has their own way of dealing with this. No doubt you will have bad days - the nurses tell you to listen to your body and rest, sleep or whatever you feel you need to do and they are right. Like you I am retired so I was able to rest when I felt like it.

I wish you strength as you go through this treatment - I have found this website a tremendous resource as I went through the the past five months - just reading other people's stories helps you feel not so alone!

I just completed 6 rounds of taxotere, perjeta, and herceptin every 3 weeks. I lost most of my hair. I had a change in my taste and in the sensation in my mouth. This was probably one of the worst side effects. My appetite continued to be good but nothing taste quite right. I never experienced any nausea or vomiting. They premedicated me prior to each treatment. The other thing I dreaded most was the neulasta on pro. It was programmed to inject 27 hours after my treatment. Within 48 hours all my bones would become sore where the bone marrow is stimulated to produce WBC's. The upside of that is that I knew within 5-6 days that all that soreness and aching would be gone. I too had a wonderful support group. I continued to work full time. I will be seeing my surgeon in a couple of weeks to set my surg date. After surg I will start radiation and resume the herceptin until I have completed a year of it. My hair has already started growing back. It will be several months before I can go without a hat or wig. The time goes by fast. Blessings to you as you start your treatments. Oh and yes a port is essential

All of your replies were very helpful and kind - thank you. I did discuss a port with my NP because I don't have an easy time with the IVs- however I am afraid that I will feel the port even tho it would be under my skin. What if I can't get usd to that feeling? And you still have to be poked each time when it is accessed, right? Seems like a silly thing for me to worry about in the grand scheme of this whole adventure, I know. Would love to hear more about a port, if any of you are able to share.

My port has worked really well. I have numbing creme to use and it is so much easier than getting stuck twice for drawing blood and an IV. After a few weeks I didn't feel it. My surgeon says he can remove it in his office after I finish Herceptin.

A port makes life much easier for everyone. It did not hurt at all and I used no numbing cream. I was aware of it but got used to it. When I was done it was an easy removal with local anesthesia only. And I can hardly see the scar. Get one

Weighing in on the port question, i had my four rounds of chemo without one and may decide to get one at some point. But until then i am content not having one. If i get one someday, it will be because i want it.

Everyone says i have "great veins", which is aesthetically not pleasing but useful right now. I am happy to have gone with a wait-and-see approach so far. I think there is no wrong answer

I didn't do port either but next week is my third infusion and then I only have one more. I lost my hair after the first treatment- cyotan and taxotere is what I take. This week I just started going bald it was easier and I wear hats when needed but prefer all natural for me. Overall my treatments are okay and I am working full time and managing the pain and metal mouth. Prayers and kudos to all!! It's a journey