Treatment Update

Sorry I have not updated this blog in quite some time! Things have been progressing, but; at a much slower speed. It seems like nothing is happening until I look back since my last update!

Since the last update:
-I've had my port removed!
-I've started radiation
-I've enrolled in a clinical trial for a vaccine for my specific type of cancer

Port removal
Easy, painless. It was weird to go back into surgery just 3 weeks after my big surgery! But, it's out and healed! I'm so glad to see it go! It got me through blood draws and 6 rounds of chemo. But, it never worked quite right and was painful if the muscle it was attached to moved much. Sayonara!

Radiation
The radiation oncologist has prescribed the maximum amount of radiation for me because my tumor was so large and the cells were so aggressive and fast growing. So, I will need 30 treatments with radiation. 25 of these will cover from the collar bone to the bottom of my rib cage and front to back on my right side. The other 5 are "boosters". These will be aimed directly at the spot where my tumor was. I am half way through! I go 5 days a week, it makes me tired and burns my skin. It's harder than I expected, but; it is so much easier than chemo! I am glad I live pretty close to the hospital. It is hard to devote an hour every weekday to radiation (I would so much rather take a walk or play with my kids). The best news about radiation is that it is the last stage of my treatment plan!!!!

Clinical Trial
I have been accepted into the second phase of a clinical trial that is focusing on a vaccine for my type of cancer! It's pretty amazing! Only about 80 people in the world will be able to participate. The vaccine is called TPIV 200. It is a "folate receptor Alpha T-cell vaccine". There are 2 protocols. The first is a dose of the vaccine every 3 months for 3 years. The second is a "primer dose" of chemo (only before the 1st dose, 12% of a normal dose meant to prime your immune system) followed by the same dose of the vaccine every 3 months for 3 years. The vaccine is designed to stimulate my T-cells and get them working!  As much as I don't want unnecessary doctors appointments and needle sticks I feel like I need to do this. I know I am lucky to have the opportunity! I won't start this until November. So, I will have some normal time between finishing radiation and starting the vaccine.

My hair
My hair is growing!!! It's as thick as ever and about an inch and a half long. I stopped wearing my wig about 2 weeks ago. I still wear it to James' school just because he loves it. Hahaha. But, I am so happy to have hair! I look more like G.T. than ever!

From here...
Since my cancer was so aggressive I will continue to get a CT Scan every 3 months for the next 5 years. This type of cancer has a high recurrence rate. But, everything having to do with my treatment has been the best case scenario! So, this will be something I will continue to be vigilant about, but; I'm trying so hard to not worry! I don't want to be so overcome with worry that I don't enjoy the good days/weeks/months/years!

We have planned our trip to Florida to build sand castles on the beach! The thought of that has gotten me through some of the worst moments of this experience! We are going to Disney World for a day then on to Captiva Island for a week! To say we are all excited would be an understatement! I'm ready to celebrate and have this behind all of us!

Thank you so much to everyone who has helped us! My mom, Jim's parents and sisters, Hattie (my awesome friend/neighbor), Jennie (my awesome friend), Julie (another awesome friend) have all stepped up to watch my boys and help me for radiation! We've received several gift cards for meals and packages of fun! I've been terrible with the thank you notes, but; they're coming!

Thank you all so much for making this hard time so much easier! Love you all! 

Surgery

On Friday I had an Oncoplasty.  This is a lumpectomy and breast reduction done at the same time.  The lumpectomy removes whats left (if anything) of the tumor and any clips or scar tissue left behind.  By combining this with a reduction they reduced my chances of getting breast cancer again and made me symmetrical.  Also, they removed my sentinel lymph nodes.  These are the first few lymph nodes that the tumor drains into.  In my case, they removed 5.

Everything has been tested and the results are in.  NO LIVE CANCER CELLS!!!!

What I've been hoping for since diagnosis was a Pathological Complete Response (PCR).  This is a PCR!  It seemed like a long shot in the beginning stages of treatment.   But, here we are!

What does this mean?
-This is the best possible outcome for someone with triple negative breast cancer
-90% cumulative survival rate over 10 years
-very unlikely this cancer will reoccur

This is amazing news because of the prognosis but also remembering where I started!  My tumor is the largest I have read about in any journal.  The fact that it never went into my lymph nodes is amazing and that I was able to achieve a PCR is even more amazing!

I will still need radiation as the final stage of my treatment.  But, NO MORE CHEMOTHERAPY!  It would be an understatement to say we are excited!  We couldn't be happier!

Thank you for all the gifts, cards, dinners, visitors... Wow!  I'm constantly in awe of the love we have received!  Thank you all for being a part of this journey!  I can't say the journey is over but I think I can say I am cancer free!  That is pretty amazing!

  

Chemos 5 & 6

I am done with Taxotere and Carboplatin!  I am so happy to see them go!

These past few months have been a test of my willpower and strength.   I am SO incredibly happy that the response from the chemo has been worth it!  We have had nothing but good news since my diagnosis.  But, when those side effects kick in and I'm stuck in bed for days it's hard to remember how lucky I am.  When I sit in the waiting room at the oncologist and hear people talk about how their chemo is not effective or see people that have to be transported by ambulance I remember how healthy I actually am.

I didn't write about chemo #5 because its just the same as every other one.  The same can be said for #6.  Nothing very exciting or remarkable about either.  I'm just glad they're behind me and  I can move on to the next phase!

I met with the 2 surgeons that will be operating on me. I am planning for a lumpectomy. The plan is to remove the area surrounding the tumor as well as any mass (if any) that is left.  After that, a plastic surgeon will take over and normalize both sides.  It was a tough choice between lumpectomy and mastectomy, but; I trust my surgeon and she assures me that my prognosis is the same with both.  I will have surgery on June 23rd.  My recovery will be anywhere from 2-6 weeks.

After surgery, they will take the tissue (lump and lymph nodes) removed and test it for cancer cells.  Best case scenario, there are no live cancer cells present at time of surgery!  This would be a pathological complete response (better prognosis and no more chemo)!  If there are live cancer cells present in this tissue then I will need 4 more rounds of a different type of chemo.  Obviously, we are very hopeful for a complete response.  Both of my doctors have assured me that it is very likely with what they see and feel but they can't say for sure until the pathology (results of the tissue) comes back.

After surgery I will still need radiation.  I'm still waiting on details for what this will look like.  Most likely, daily treatments for 4 weeks.

Then I should be done!  I will still need screening every 3 months for the next 5 years and to be very vigilant for any signs of recurrence (as it is common with this type of cancer).  

I'm trying to remain positive, enjoy summer with all my boys, and get strong for surgery!  Chemo has taken a toll on me but I still have a long way to go!

Chemo #4

Last chemo was not great. The iv left burns on my arm from the chemo, I got a cold that turned into a sinus infection, James got Strep Throat... the last 3 weeks have flown by because they've been full of sickness and birthday celebration. 

 

James' Birthday
James turned 6! I was so happy to feel well enough to bake him a cake, celebrate with family and celebrate at his party with all his friends! Turning 6 is a pretty magical birthday and I'm so glad I was able to be magical. I think he had a pretty special birthday.

MRI
I had my half way MRI on Tuesday (4/4). I was hopeful they would be blown away by how much my tumor had shrunk. Good news- they are! At first the numbers don't seem like much has changed. So, I came home and modeled my tumor before chemo and now out of playdoh. I just had to have a visual and that's he best I could do.
Tumor before chemo: 12cm x 6.4cm x 9.2cm
Tumor half way through chemo: 2.9cm x 5.4cm x 6.6cm
Here is a visual of what the tumor looks like.

Chemo #4
Port access was almost impossible.  My port is not too small, it is "floating".  One of the stitches holding it in place has come loose.  So, every time they try to access it... it moves.  Over 100 attempts later they got it!  The surgeon does not want to fix it because I only have 2 chemos left.  So, I will go to his office before the next 2 chemos for him to access it.  Then, off to chemo.  Uneventful as usual for the day.  After this one has been rougher than the others.  But, today I'm feeling more like myself than I have since before chemo #3.

Surgeon Appointment
BEST APPOINTMENT EVER!!!  Both the surgeon and the oncologist believe that I already have a pathological complete response!!!  This means that there are most likely no living cancer cells left.  While there is still a mass, it is not receiving blood flow and appears and feels like it is already dead. I will still need the last 2 doses of chemo to ensure all cancer is gone before surgery. The surgeon believes that my chance of reoccurrence is 1-2%!  This is amazing news!!!  My surgery is scheduled for June 23rd to remove what is left.  After that I will need radiation.  Still a long road ahead, but; so encouraging to get some good news!

Here are the pictures the surgeon showed me of my tumor.  The top one is the MRI image of my tumor several weeks before my first chemo.  It grew much larger than this before my first chemo.  The bottom one is the MRI image taken 2 weeks ago (after 3 chemos).  The bottom image also shows the blood supply to the tumor.  If there were blood supply it would light up red and orange.  As you can see, nothing!

I'm already feeling SO much better from this chemo.  Glad to have my mom here to help with the boys so I can rest when I feel like it!  We even got out today and enjoyed the beautiful weather!  So many thank you's to everyone who has helped with the kids, helped with meals, sent a card or package and texted to check on me!!!  Wow.  We are so grateful for each and every one of those!

Not looking forward to the next chemo, but; I am so ready to check it off the list!

Chemo #3

Halfway done!

Happy St. Patrick's Day

After chemo #2 I felt pretty terrible for a full week. After that, I really felt like myself for the first time since all this started! I got 2 amazing weeks full of sunshine, family and friends! I couldn't have asked for a better 2 weeks! I also got another wig. I was missing my long hair. I love both my wigs! It's fun to mix it up!

New wig!

Chemo #3- Done

Friday was my third round of chemo. There have been a few ups and downs. When I got to the hospital, they went to access my port and couldn't. They thought it might have flipped. After several attempts (ouch!) to access it they settled on an iv in my arm. This is not optimal. Veins in your arm are much smaller. So, everything takes more time. Next, off to meet with the oncology nurse. Good news! My tumor has shrunk again! She had a very hard time feeling anything (yay!) and said what she could feel was not well defined. She believes what she could feel was most likely dead cells (yay again!). She didn't want to do an ultrasound because I will have another MRI in about 2 weeks. The MRI will give us a very clear picture of what's going on in there: how much of my tumor is left, does it have clean margins, are the dead cells being absorbed by my body (gross I know but I hope so)? Everything was very positive and optimistic in the oncology office! Then, time for an X-ray to verify port placement (has it flipped).  It was quick and easy. I viewed the images and it looks fine to me. Perfectly symmetrical. Then it was time for chemo... so much time for chemo! Since we were doing it through an iv they could only do so much at a time. I also couldn't use my right arm to do anything. If I moved it I would get shooting pain. But, if I kept it perfectly still, under a blanket and didn't move the pain was tolerable. 7 hours later we were able to leave and go home! That's a long time to be at the hospital!

Port Update

Since chemo, I have met with a surgeon about my port.  It has not flipped and is fully functional!  But, it is too small.  We have decided to keep the port I have.  The surgeon suggested having another surgery to switch out the one I have for a bigger one.  But, my days that I feel good are just too important to spend them fixing something that is not actually broken. It may be difficult to access going forward, but; I'm ok with that. 

Being halfway finished with this kind of chemo seems like a milestone.  It has been harder than I thought at times.  We appreciate all of your support so much!  The boys are doing ok.  But, if they are being really honest I think they are SO sick of me being sick!  They just want me to do the things I normally can with them. 

Cheering on KU!

This picture was in my timehop of Facebook.  8 years ago Jim and I were at the beach we talk about going to when I'm all well.  Keeping my eye on the prize... health!

Chemo #2 and Updates

A LOT has happened in the last 3 weeks!  I felt pretty terrible for a few days in there and even got a cold last week so it has not been the most fun 3 weeks.  But, I have some very exciting updates from this time:

I do NOT have a genetic mutation that causes cancer!
This is good news because it means I am less likely to develop other types of cancer or to have a recurrence of this cancer!  Also, great news for my relatives!

I do NOT have another type of cancer next to my tumor!
In my MRI they saw "smudginess" next to my tumor.  They believed this was another kind of slow-growing cancer that would not be treatable with chemo.  I was told I could have an MRI guided biopsy to confirm their suspicion or just plan on a mastectomy.  I thought and stalled and thought some more.  But, the overwhelming thought was The more information the better.  So, I had the MRI biopsy on Tuesday.  Wednesday I got a call that the "smudginess" was benign tissue.  I thought that was the case but didn't want to be over confident.  I am so glad to be right!!!

Best news of all... my tumor has shrunk!
Over half of it is gone! I can no longer feel it!  This is right on track for a complete pathological response!  I couldn't be more happy to see it go! My oncologist referred to it as a "chemo sensitive tumor" and she is VERY happy with the way its responding!

My hair is gone
I hung on as long as I could.  Jim and the boys helped me cut it.  I got sad getting everything ready.  It's a hard thing to go from long hair to no hair.  But, It was falling out by the handfull and I knew it was time.  I put most of it into 3 pony tails and cut them off.  Keeping one to compare to my hair when it grows back (color and texture are likely to change).  Then, there was no going back!  James shaved for awhile and Sam.  Finally, Jim and I cleaned it all up and it was gone.  I'm sad to not have much of a choice in the matter, but; it's a small price to pay for getting healthy!  I'm getting better at going out in my wig and have left the house in a hat once.  I feel like everyone is staring at me!  Maggie assured me that I will not care so much soon!  I hope so! The boys like my wig and scarves.  The DO NOT like my bald head!  It's getting better... slowly!

My 3 pony tails

The boys are not sure about all this! Crazy hair!

Wig style

My scarf James picked put for me! My friend in Australia showed me how to style it (thanks Kira)!  So comfortable.

Chemo #2- Done!

Chemo today was much more laid back than last time.  My treatment lasted 3 hours and was painless.  I'm not having any side effects yet, but; I know they're coming!  I am dreading the tiredness, stomach pain and thrush (tongue soreness caused by my weakened immune system).  

Kicked up my feet, played cards and watched Wheel of Fortune

Wore all my good luck charms

Got a visit from my friend Christa to show off our twin hair

I want to say a BIG thank you to everyone who has helped us over the last few weeks!!  Your support has meant the world to all of us!  Meals, play dates, gift cards, presents from near and far, visitors, contributions to our care fund... It all helps SO MUCH!  I can feel your support and am so grateful!  Thank you to everyone who has reached out to us in any way at all!

 My new favorite song! Here is a verse:

Hey!
I'm not giving up today
There's nothing getting in my way
And if you knock knock me over
I will get back up again
If something goes a little wrong
Well you can go ahead and bring it on
'Cause if you knock knock me over, I will get back up again
Whoa oh oh oh, get back up again, whoa oh oh oh oh oh

Chemo #1- DONE!

Finally! Today I had my first chemotherapy treatment! I've been waiting for a month to do something about this tumor and today was my chance!

We were supposed to start Wednesday. There was a problem with how the paperwork was filed and our request for coverage could not be approved. We were disappointed to not get the treatment I needed, but; were not willing to sign a coverage waiver that could potentially cost us $30,000 for one round of treatment. So, we waited. Yesterday the problem persisted. We call the doctor, we call the insurance, doctor, insurance.... no resolution. Last night we did not know if the treatment was on or off for today. After more back and forth with the hospital and insurance company the president of KU Med stepped in and approved my treatment! Finally! It was go time. Then it all hit me at once. I got sad hugging my mom and boys bye as we left the house, hands shaking and scared.

By the time we got to the hospital I was ready to go! They accessed my port in my chest and drew blood. This port is amazing! I was so scared to get it... now I love it! Then up to oncology. We now know my treatment plan for sure!

-6 treatments (chemo sessions)
-treatments will be 3 weeks apart
-each treatment will be a large dose of Taxotere and Carboplatin
-I will have surgery in about 6 months
     *if there is a complete pathological response (tumor is completely gone at time of surgery) then
       done!
     *if the tumor is more stubborn then surgery will be followed with 4 more chemo treatments with
       different drugs.

This is the treatment plan we have been hoping for since the day our oncologist diagramed it! I feel so fortunate to get this regimen as it seems to have the most promising LONG TERM effects! My cancer is notorious for popping back up within the first 5 years. We want to do everything (obviously) to prevent this! A complete pathological response to the chemo is THE way to make that happen!

I got the treatment. It was not dramatic. I anticipated a much scarier scenario! We had a little room with a recliner to ourselves. Jim went and got us some lunch at the shopping center across the street. Everything they did went through my port and was painless! First they administered a bag of steroids. Next was the anti nausea meds. Then came the real drugs! The first was the Taxotere. I was worried. 2 nurses have to check your chart, wear protective clothing and gloves and verify you're getting the right dose before it can start. Then they stand there and stare at you for 15 minutes anticipating a reaction. I felt completely normal. No reaction... thank goodness!!! Last was the Carboplatin. Still fine! Before we knew it we were all done! They took the IV out of my port and put on a bandaid and sent us on our way!

4 hours later and I still feel fine. This will probably change in the next few days. But, maybe I will be the one who doesn't get the horrible side effects!!! Crossing my fingers. One side effect I cannot escape is the hair loss. I plan to loose my hair in 2-3 weeks. I dread this because I don't want to LOOK sick. But, it is inevitable. I will deal with it when it comes.  My wig, Hermes scarves and cute hats will be my new style!

We came home to beautiful cards on the door and 2 little boys who had a pajama day! Thank you Zizi for making this day easier for all of us!!!

I am so grateful to have this treatment done! On to the next 5!