Starting Chemo March 2016

Popping in from April 2015. I'm very sorry that any of you have to be here, but glad that you'll have this group to support you along the way. Some of you will have an easier time of it than others in terms of side effects, but you'll all be able to help and support each other on this unfortunate detour.

At home, I was very comfortable without anything on my head. My 11 year old was a little unnerved by it at first, but he came around and eventually told me he didn't remember what my pre-gobbledy gook hair looked like. Gobbledy gook was what he called the whole cancer ordeal. For those of you with sensitive kids like mine...know that it's rough, but it does get better. They do struggle, but they do also adapt over time.

I bought an inexpensive wig online. I wasn't sure I was going to like wearing a wig and didn't want to spend a lot (even if insurance would reimburse) until I knew for sure. When it came, I found it way fluffier then it looked on-line and was very hard to style. Soon after I got it, I wore it to take DS to the dentist. I didn't want to get into a conversation with them about cancer in front of DS. I also wore it a couple months later when we took DS to his first rock concert. I used a clip and headband to make it look a little more 'normal'. Other than those 2 times, I never bothered with the wig or wished that I had another one. I wore either a baseball cap or a Buff. I ordered a couple of official Buffs that had UV protection. They are very comfortable and easy to wear. They were great for the gym too.

The above tip about sweatpants is a great one. I also wore a moisture wicking shirt. Some of the pre-meds and treatments can make you sweat a bit during and after treatment. Others may give you a chill, so bring a sweater too. I iced my hands and feet during taxotere and carboplatin infusion and also sucked on ice chips. I used an actual bucket of ice for my feet (a little awkward) and painful at times, but I now have zero neuropathy in my feet. I held onto bags of ice in order to ice my fingers. It wasn't as cold and I would often put the bags down (to eat, use my phone, hold a book)...needless to say, I have a little lingering neuropathy in my fingers, but it's getting better bit by bit. The ice chips were supposed to help prevent stomatitis. Sometimes it works, for me, it didn't. Or maybe it would have been worse.

Make sure to drink tons of water before and during infusion. I had an infusion nurse tell me I would know if I was drinking enough water if I spent more time walking back and forth to the bathroom than I did in the infusion chair. A slight exaggeration, but very important to hydrate. Those of you getting Adriamyacin...it's called the Red Devil. It goes in red and comes out red. The more hydrated you are, the faster your urine returns to it's normal color. One time I was so well hydrated that the red was gone before I even finished my cytoxan. Also, follow any advice you get about how it's easier to stay head of nausea than it is to get ahead of nausea. Totally true!

About nail polish...I used the dark color polish. My MO told me it was okay to keep them dark unless I started having nail problems. I also kept them filed short. I replaced the dark (purple) polish once a week, used a protein strengthener as an undercoat, and used a diamond strength top coat. I had one small spot on my big toe that looked like it was going to start lifting, but it never did.

Hello to everyone. Just got my oncotype results from my surgeon the other day and was shocked with my result of 57! Definitely need chemo. I would imagine I will be starting this month. I will get all my details this Wednesday when I see my MO again.

I haven't seen my MO since getting the results. I see her on Wednesday. I will let you know what she says about it.

Oncotype is a test that gives you a number from 0 to 100 that indicates the chance of recurrence. It is given mostly to early stage cancer patients with no node involvement. The higher the number, the higher the chance of recurrence. It is used to help make decisions about whether or not early stage cancer patients will benefit from chemo. I read somewhere that about 50% of those tested have a low Oncotype score (maybe chemo wouldn't be as much of a benefit). About 25% have intermediate and 25% have high scores (these are approximate). There is an article at http://www.breastcancer.org/symptoms/testing/types... that might help you determine if it would be of benefit to you.

Thank You Jonsey

So Tuesday is my first chemo infusion. How long does it take? What should I bring? I hear ice packs for fingers and toes. Does it burn? Can you feel it? Can I drive home.....

Just an update: My port is IN, it feels surprisingly fine and it doesn't stick out very far. I'm looking forward to taking yoga and some physical therapy at a local center for cancer support to learn how to stretch and move without protecting that area too much. I had it placed 2/25 in the afternoon under general anesthesia and it worked out just fine. I have a glued incision which actually looks very nice -- same surgeon who will eventually perform my mastectomy and I was comfortable with the experience.

I had a 2-hour-long personalized chemotherapy class with a physician's assistant from my medical oncologists office on Friday. It was a lot of information, but I did like that it was tailored to my specific regimen and their own experiences with patients with my health status. We are definitely doing some shopping this weekend for various things and amazon prime delivery is also in full force. I feel as ready as I can be. Day 1 on Friday 3/4 is going to take about 5 hours because they're going to drip everything in very slowly. I have the cold packs on order along with extras.

I have a wig appointment on Thursday to check out that angle and see how I feel about that. I'm trying to get an appointment with an attorney as well to finalize some open-ended items around finances and insurance.

It's all starting, I find that if I keep myself busy accomplishing tasks AND if I go to bed early rather than sitting up late and starting to feel tired and sad that it is better so far. I am trying not to look too far into the future for cumulative side effects and I am finding that if I go looking for bad information on the internet that I will find it...so, I'm being very careful about what I ingest mentally right now as I get started. Too much at stake on being able to get out of bed in a few weeks' time - it needs to be all about me at the moment. I also worked for 2 hours today (a Saturday) and I plan to keep on remaining very relevant at work and to keep myself looking forward.

Good luck everybody who is starting next week, I am thinking of each and every one of you who are on this journey.

hi ! My name is Carla I'm 45 and was diagnosed with multi focal IDC December 11,th 2015. I will be getting 4 rounds of chemo every 3 weeks. I had a k67 score of 97. My oncologist felt this was the best course of treatment due to the high grade and score. I get a port put in March 9th 2016 . I am nervous because I had a severe MRSA infection in my left drain and was hospitalized. They had to remove my expander and haven't yet replaced it due to me healing after removal. My concerns are infection and hair loss. I would love any input .

Bone scan for me:

1. Quick injection of dye

2. Instructions to drink water

3. Come back 3 hours later (time lets the dye get to bones)

4. Lie on a table, no poking, no noise, just a warm blanket while a little xray thing moves above me, slowly and silently. Breathe normally. 20 minutes. I took a nap. It was actually very nice.

I hope this is helpful.

For my future tests, I plan to call a few people to ask what the real deal is for the exact location I'm going - there are enough procedure differences that I am now looking for specifics. I found that the bone scan was the only one with no surprises. I am starting to hate surprises.

I'm definitely starting to feel nervous. I have my MRI on Tuesday and CT and Bone Scan on Thursday. I find that every ache or pain or anything I question if it's invading another part of my body. Not knowing is awful.Does anyone know on average how long it takes to get results from these tests?

Do you have a "point person" nurse? I've made a point of asking, "who's driving the bus here at this point?" so that I keep the accountability and lines of communication open between the surgeon and the medical oncologist. I am expecting to be calling that person with questions and generally bothering them.

For my scans, here is what occurred:

-- the practitioners administering the exam told me when the scan would be read by the radiologist and then accordingly when my doctor (s ) would receive the report. I also asked about how to get copies for myself as a reminder for my own records.

-- in every case, the reading by the radiologist was done within 1 business day

-- I discovered that there is a cohort that my doctors call, "the tumor board," where they discuss results and the next step or conclusion for treatment based on the readings. This made me see that there is an entire team looking at me and my results. Felt better about that. Results are not "languishing" somewhere where no one cares. That felt better even if it didn't speed things up.

-- I had appointments that lined up nicely with that timeline to hear results within 48 hours. I think it was a benefit (now, after the fact) to hear the entire story and not just a quick, "scans are clear," because they were looking at how the results informed decisions about future treatment -- it educated me for the process.

-- the waiting was the longest 48 hours of my life almost without exception

-- I do not think I'll have patience to wait longer than 48 hours in the future. Let's see how strong I am.

Welcome to all you ladies who are starting your treatments this month.  I will be keeping you in my thoughts and prayers as we travel this journey together.  I am sure we will be on a first name basis before our journey ends somewhere down the road.

I met with my principle Medical Oncologist (MO) last Thursday and will meet with a second one from University of New Mexico Cancer Center on March 1 for a second opinion about my treatment plan and meds being used.  

I have a BRCA2 gene mutation and am HER2 positive - the cancer is Stage 3 and my KI67 was 85. Multiple lymph node involvement as well as muscle infiltration in my arm. 2014 & 2015 mammograms were clear.

The treatment plan is to do 3 rounds of Herceptin & Perjeta along with Taxotere & Carboplatin administered 3 weeks apart.  At the end of that 9 week period I will have another MRI that will hopefully show that the cancer is shrinking and not continuing to grow.  If it is shrinking then I will have 3 more rounds, then have Bilateral Mastectomy (BMX) and ovarian/tubal surgery.  If it is not shrinking, I will have the surgery at the end of the first 3 rounds of treatment, followed by more chemo and radiation.

I also have to manage my Type 1 diabetes during the chemo.  The big challenge will be the steroids that I will take before and 3 days after each treatment.  Thankfully I am on a pump and can change my insulin rate to try and match the highs that are expected.  The challenge will be to keep it from dropping too low when the steroids start tapering off. 

I am sorry that any of you have to be here, but want you know that I am also here to offer encouragement and you can vent on here anytime or to me personally.  I will listen and encourage you so you don't have to vent to your loved ones since they are trying to cope with your diagnosis also.  My hubby is great to do anything for me until I start whining then I see he is also stressed by this.  So it is great to get to know some new friends.

Loretta

HolaSandy, the MRI results don't take long but you need to keep up with communication and let them know you want the results ASAP. Nobody went over the scans with me until I asked. The actual procedure is 45 min and loud. But, if you relax and think of other things it'll go by fast. Don't know anything about bone scans. If you get a PET scan that's super easy. I felt the same way with pains all over and that it might be spreading. Just take one day at a time and one scan at a time. That's all you can do for now. )

Made it to MO today after all. Roads were fine. Tests were all good except low iron and some small lesions (not cancer) on liver. They will do an MRI to figure out what they are (fatty deposits, vein abnormalities etc). All clear other than that which is a relief. MRI and echo can wait till they are available and chemo can go ahead. Now some central agency has to check what the MO decided as a safety/backup measure and then we start. Should be next week I think. They said they will do it through IV and if I have problems, they will put in a pick? Never heard of this. She said they don't do a port for 4 rounds.

2 questions- has anyone else had small lesions show up on liver CT?

2) has anyone heard of a pick