In honor of my 6th Taxol treatment (HALFWAY THERE!!!!!!!!) I thought I'd write a blog about some of the awesome side effects. I was going to try to write a funny poem... but I couldn't find anything that rhymed with "butthole" :)
If you think of anything to complete that rhyme, lemme know!
So instead of writing a poem, I'll use another analolgy for side effects. You ever watch drug commercials? And the voice comes on at the end and speed reads through a list of horrible sounding side effects? And you wonder who the heck would risk "anal leakage" just so they can lose a little weight?
Or am I the only one that considers that a head scratcher?
Well I kinda feel like my life is that little blurb at the end of the commercial. Only I generally feel like the side effects are worth taking a drug that could keep cancer at bay and keep me alive for many years to come. If you asked me to go through this for weight loss, I'd tell you to go sell your crazy somewhere else.
So here it is. If you were watching a commercial for chemo meds, the announcer would have to burn through this list of common side effects:
Nausea, vomiting, loss of appetite, temporary alopecia (fancy word for baldness), constipation, diahrea, bruising, tiredness, mouth sores/ulcers, metallic taste in your mouth, heart damage, infertility, loss of period, neuropathy, general aches and pains, vaginal dryness, increased chance of infections, forgetfulness, chronic nosebleeds, and other more serious side effects.
Sounds like a picnic, right? I mean who doesn't enjoy feeling like you just pencil rolled down a hill that had lots of baseball sized rocks on it? (aka "general aches and pains") Or, you know, having crazy poop problems? And that whole forgetfulnes thing... wait... what was I going to say again?
When they tell you about these side effects up front, you think "that doesn't sound THAT bad." And to be totally truthful, I've lived through worse. I've woken up with hangovers that are worse than some of these side effects.
BUT (and this is a big but) a hangover lasts a day, maybe two if you really partied hard.
Chemo lasts for like 3-4 months.
And now that I'm on Taxol, the side effects aren't getting any better, they're becoming more cumulative. Don't get me wrong, A/C wasn't fun. However, things like the nausea and the loss of appetite got better with each infusion. So each infusion seemed to get a little easier.
Taxol is the reverse of that.
Taxol seemed all friendly at first. It was like "nice to meet you. See? I'm all gentle and don't kick your ass like that nasty, old A/C did."
And you think "Taxol, it sure is nice to meet you. I like you much better than A/C."
And then Taxol, being the two faced fiend that it is, turns out to be some sort of voo-doo priestess and you're the new target. Each treatment, Taxol sticks a new giant pin into your little voo-doo doll. And that's kind of how I feel, like a little doll with lots of pins in it.
Because Taxol can cause nerve damage. Hence the neuropathy and general aches and pains.
And by aches and pains, I mean really random sharp pains all over your body.
And by neuropathy, I mean numbness or tingling in the extremeties. Doesn't sound bad, but boy oh boy is it annoying. And can make it difficult to type (another reason for my lack of blogging).
Oh and then there's the chronic nose bleeds. Nothing like having a work conversation with a Kleenex stuffed up your nose. Seriously, that happened once. Luckily the person I was meeting with just took it in stride, but I can't say I'd consider it one of my finer professional moments.
So that's where I am. Halfway done with Taxol and ready for it to be over. I feel like I've gotten the side effects reasonably under control through use of various vitamin supplements and Tylenol. I'm still very positive. I'm still working and enjoying day to day life more than I did on AC.
BUT I'm ready to go back to feeling like me. I'm ready to have this be over and feel like my body is mine again.
So HURRAY for the half way point, but God please let this 2nd half go fast :)
Sorry for the pause there.
I started Chemo. I'll just go ahead and leave it there because chemo/cancer is the perfect excuse for... everything. But that's a whole 'nother blog :)
The last question I get alot of is "what is your treatment?" As I said at the end of the last blog, due to some changes in my diagnosis, my treatment plan has been simplified.
Well the big change is we got some additional results back on something called a FISH test. Don’t ask me what it does or anything like that (heck, I might even be getting the name all screwed up). But what it found is that a small % of my cancer cells are HER2+.
Basically there was a small cluster of cells in my lump that are “fed” by a certain protein my body produces.
Because cancer wasn’t complicated enough, my body decided that I should house two totally different types of cancer… yippee!!! I'm sure this isn't that uncommon, just my cluster of HER2+ cells were so small that they were difficult to find.
Anywho, as the majority of my cancer (triple negative) has no treatment outside of chemo and surgery, and the Avastin trial isn’t getting great results when looking at other forms of cancer, my doctor recommended that we use continuing treatment for that small % of my cancer that has a proven and excellent long term treatment.
And I’m totally onboard.
So here is my treatment as I am thus far aware of it.
First, I will have 4 rounds of AC, every other week. Un-abbreviated, this means Adriamycin and Cytoxan (hence AC). This is one of the most common treatments for breast cancer.
The Adriamycin (or the A of AC) blocks DNA production and also inhibits the enzymes responsible for repairing DNA. Cells cannot live without DNA, thus when they’re deprived of it, they die. No, this drug cannot tell the difference between healthy cells and cancer cells, but as the cancer cells are generally the most rapidly reproducing, this is where a majority of the effect takes place.
The Cytoxan (or the C) stops cancer cells from replicating.
So basically the A helps destroy cancer cells that are already in my body and the C stops them from being able to replicate and grow into tumors.
After my 4 rounds of AC, I will have 12 rounds of a drug named Taxol, one injection per week.
Taxol slows or stops cell division, or keeps enzymes from making proteins that cells need in order to grow.
To help with the HER2+ portion of my cancer, I will also receive a drug called Herceptin. This will be given starting at the same time as my Taxol.
Herceptin is an antibody that blocks the HER2 protein from attaching itself to cancer cells, preventing them from growing. Basically, herceptin attaches itself to the cancer’s protein receptors, stopping the cell from being able to absorb the HER2 protein. It can also signal the body’s immune system to destroy the cell that it’s attached to.
I am not sure how often I will have to get an injection of Herceptin. This is a drug that in the past has been given weekly for a year. There were studies recently done saying that it might be as effective given every 3 weeks. This is a conversation I will have with my doctor as we get a little closer to that time.
So that pretty well covers my treatment plan. None too exciting eh?
All in all, I’m feeling incredibly positive about this. I feel like this is a good comprehensive plan for my treatment and covers as many bases as can be covered.
It is good to feel that peace of mind and joy that comes when you feel like you are in the best possible hands.
The next thing that everyone should understand about cancer treatment is that it changes ALL THE TIME.
You know Susan Komen foundation and the 3 Day walks and all those other fund raisers? Well they help fund research. And there is a TON of research going on that is exciting and changing the face of cancer treatment every single year.
So after my last blog, we all know that standard treatment = surgery + chemo + radiation (if necessary) + other drugs depending on the type of cancer you have.
These treatments alone have translated to an average 75% survival rate for breast cancer patients, which is amazing.
But to get to that elusive "cure", we move onto the exciting world of possibilities. The world of experimental drugs and drug trials.
Wow, that sounds bad huh? Mom, I swear the experimental drugs I'm talking about are ALL legal ;)
Anywho, as a cancer patient, these new drugs and trials are VERY exciting. The direction these drugs seem to be going is towards blocking/destroying the building blocks of cancer cells. Drugs to this point have focused on killing cancer, but none of these drugs have succeeded 100%. Doctors feel as though even after chemo, radiation, and surgery, the body continues to house tiny traces of cancer that can eventually lodge somewhere and cause a recurrance. The new drugs focus on stopping cancer growth and stopping recurrance by not giving cancer the fuels it needs to grow/survive.
Exciting right? I just wish these drugs were tested and trialed and proven! I wish these things were part of every treatment and that there was a true cure.
But we're not there yet. Many of these drugs are super new. SO new, in fact, that they are only being tested with stage 3 and 4 cancer patients (people with wide spread cancer).
I, luckily, am NOT in that group.
There is only one drug that is currently in the trial phase that I'm eligible for. This drug is called Avastin. The idea behind how it works is that it stops the body from creating new blood vessels. If the tumor can't create new blood flow, it can't grow. At least that's the theory.
This drug is already in use for certain types of cancer.
However, with stage 3 and 4 breast cancer patients, it hasn't met the barriers necessary to get FDA approval. It does extend the life of these later stage patients, but only by a few months. That being said, within that group, people with MY type of cancer (triple negative) had stronger results. It still didn't extend their lives drastically, but it was more effective than with the hormone receptive group.
Which leads to the current trial. They want to test to see if this drug has any benefit for the stage 1 and 2 cancer group as far as stopping recurrance.
I've been asked to take part in this trial and I'm struggling a bit with the decision. In my cancer group (triple negative), I don't have any long term treatment. There are no drugs to keep my cancer at bay. Recurrance rates are higher. Survival rates are lower.
If this drug can possibly keep my cancer from coming back, then I'm ALL ABOUT IT!
That being said, I can't get surgery while on this drug. Due to my pregnancy at the time of diagnosis, I only got a lumpectomy for my first surgery. The plan was to get a full bilateral mastectomy and reconstruction after the baby was born and chemo was complete.
I personally feel that a bilateral mastectomy is still very key to keep recurrance at bay. In my family history, everyone that has had breast cancer has had recurrance in the other breast. This surgery is very important to me.
So those things being said, here are my perceived options:
Option 1: Get bilateral mastectomy before I start chemo. This means chemo is delayed for at least another 6 weeks. The thought of little cancer cells floating around in my body trying to spread freaks me out. It makes me want to start chemo yesterday. But surgery first means I can probably have the best of both worlds, surgery AND being a part of this trial.
Option 2: Start chemo and be a part of the trial and wait for surgery. This study has 3 groups, one that has plecebo, one that gets 8 rounds of Avastin (all during chemo treatment) and the 3rd that takes Avastin all throughout chemo (8 rounds) and another 10 rounds after treatment is over... totalling about a year of treatment. If I get group 1 or 2, then I could still get surgery when I originally thought I would, which is after chemo. If I get the 3rd group, then surgery would be delayed a year. The mastectomy, recovery and reconstruction is another long process and I couldn't even begin to embark upon that until 2012. And would my insurance even cover it a year later? Just so many questions.
Option 3: Don't take part in the study and just go with my original treatment plan. Chemo, then surgery. My fear with this is that the cancer comes back in a year or two and I always wonder "what if I had done the trial?"
And this is my current struggle. I need to have some conversations with my doctor, talk to my insurance company and get some questions answered. The more information I have, the better the decision I can make. Hopefully I will be able to come to a decision in the upcoming week as I learn more about each of my options.
Note: I wrote this blog on Sunday. I spoke with my oncologist yesterday and some things about my diagnosis have changed that change EVERYTHING. Aside from the obvious "MORE CHANGES?!?!?" reaction, this is actually a really good thing. I'm 100% comfortable with my diagnosis and my treatment plan. More to come on this :)
OK, so now you're aware of my diagnosis. I have Invasive Ductal Carcinoma, grade 3 of 3, triple negative.
Next question is what is your treatment. Before I get into the specifics, I thought I ought to explain a few things.
1. Standard Treatment - surgery, chemo, radiation, and other standard treatment drugs.
2. Clinical Trials - experimental drugs, what they are and the trials I am eligible for.
3. My plan of treatment (this is still to be decided, so I will leave this for last)
This blog will be about the "standard treatment".
Every surgeon and oncologist will tell you there are 2 steps to cancer treatment.
First there is localized treatment. Cancer is generally located in one place, sometimes more if it's spread (metastasized). How do you "treat" the tumors? You remove them. This means surgery. In breast cancer, this translates to lumpetomy (removal of just the lump) or mastectomy (removal of all of the breast tissue). Mastectomies are broken into unilateral (one breast) and bilateral (both breasts). Surgery and recommendations are based on the type of cancer, how large the tumor is, and if the patient has a genetic mutation/family history that makes them more likely to develop cancer in both breasts.
The 2nd half of treatment for any cancer is "systemic". So surgery removes the cancer, but there is the belief that even after you remove the cancer, there are tiny cancer cells roving around your body that could turn into cancer elsewhere (metastisis). This is where chemo and radiation are introduced.
In very simple terms, chemo drugs are drugs that attack rapidly dividing cells. As cancer is made up of this type of fast cell division, it stops the growth of cancer and can kill it. This is also why chemo causes hair loss and sores in the mouth. The fastest dividing cells in a healthy adult are hair, fingernails and in the mouth. Chemo attacks those healthy cells along with the cancer cells. So the hair falls out, the fingernails slow growth and some patients experiance mouth sores.
The order in which these treatments are applied are currently being researched. There is Neoadjuvant therapy, which means chemo prior to surgery. In the case of larger tumors, chemo can help shrink the tumor to make it more operable. There is also Adjuvant therapy, which means the drugs after surgery. In cases with my small tumor, this is usually the direction suggested.
There currently is no set scientific studies that has determined which order of treatment is best, although this is being studied right now.
So those are the forms of treatment that are most commonly used currently, chemo and surgery. Radiation is applicable depending on what type of surgery you choose. If I were to stop at a lumpectomy, I would also get radiation to help treat the remaining breast tissue, kill any cancer cells the surgery missed, and decrease chances of recurrance. As I plan on removing all the breast tissue (mastectomy), I would not get radiation.
These two treatment types are currently used in almost all cancer treatment. And I say almost because there are always exceptions to every rule.
Beyond chemo and radiation, there are other drugs that are now used in longer term treatment of cancer, but these are specific to the TYPE of cancer you are diagnosed with. If you have hormone positive cancer, you get hormone blockers like Tamoxifen. If you have HER2+ cancer, you take Herceptin to block production of the protein that feeds that cancer. The only other somewhat commonly prescribed treatment currently for breast cancer are drugs called bisphosphonates. These are drugs that help to build up the bone and strengthen the bone to help stop the spread/recurrance of cancer into the bones.
This covers the commonly used and fully tested drugs that are used to treat breast cancer: chemo, radiation, hormone blockers, Herceptin, and bisphosponates.
Next blog will discuss clinical trials, the exciting new drugs that are being tested currently and what trials I am eligible for personally.