Back To Tamoxifen

After my last visit I agreed to try Femara. It lasted one week. It made my feet feel like they were on fire. I can't tolerate that nonsense. I stopped taking it for the 3 weeks prior to my appointment. I haven't felt so good in a long time. It was the first time I haven't had cancer drugs in my system in almost 3 years. My debilitating body pain stopped just days after stopping the Aromasin. My hands are still hurting in the morning though.

At my appointment on Monday we decided that I will go back on Tamoxifen. My oncologist is HUGE on scientific studies and gave me a long explanation about new developments with Tamoxifen. Doctors used to believe that some women grew resistant to this drug and therefore it wasn't protecting them from cancer. Research now shows that some women don't have enough of the enzyme that is required to process Tamoxifen correctly. My doctor is running some lab work on me to determine if I am one of those women. If so then we will have to switch me back to an aromatase-inhibitor (boo...hiss). If I'm not one of those women I can keep on taking Tamoxifen and receive great results. I go back in October to find out my results.

He also finally said I can quit taking the Drisdol (mega vitamin D dose). I think that is contributing to my hand pain. Now I just have to take a daily supplement along with my calcium.

So all in all, I am pleased. I'm feeling better...not 100%, but better. Let's just hope all of this mess is worth it. Cancer stay away!!

It's a Bitter Pill to Swallow

My oncologist was saved today because I was seen initially by his nurse practitioner. SHE was very helpful and actually seemed concerned about my issues. She apparently went back to him and relayed my concerns so when he talked with me his bedside manner was better than usual.

It boils down to this: I have considered myself through with cancer treatment. I thought of the drugs that I have been taking as a dose of prevention. The painful reality is that I am still in the middle of treatment or better yet, I'm in a treatment that will never end. My type of tumor was very aggressive. Even with all of the treatments/precautions we've taken, I have a serious risk of recurrence due to the cancer type as well as the positive genetic mutation. These little pills that are making me miserable are daily treating my body to kill any cancer cells forming. Unfortunately the nurse practitioner had to concede the fact that we don't know long term what these drugs are doing to the rest of my body. So it comes down to basically a roll of the dice--prevent breast cancer recurrence in the short term or possibly cause a different cancer in the long term. Not great options either way if you ask me.

So I caved in and agreed to change to a drug called Femara. It has the same potential side effects as Aromasin, but some women do better on this for some reason--some do worse. I will be going back to the doctor as scheduled in July for a follow-up. We will check my vitamin D levels then and also see how the Femara is working for me.

I'm not happy about any of it. I want to be finished with cancer. I don't want to have to keep fighting this disease. I want to leave it behind and not look back. I'm tired of taking pills. I'm tired of my body being chemically altered. I'm tired of the whole damn process. Oh and to add insult to injury the 10 pounds I've gained since the hysterectomy is normal. As if having cancer and all it's repercussions aren't bad enough, I have to start getting fat too. Thanks cancer--you really know how to make a girl cry.

It's been a while...

As most cancer survivors know, cancer is always with you. As you get further down the road though you are blessed with days that you don't think about it and life almost seems normal again. I've been living many of those wonderful days not thinking about cancer. This in turn has made for poor blogging about cancer. Sometimes less is more...

I started taking Aromasin in February. It seemed to be working well for me. I have now come to realize that isn't true. About a month after beginning this drug I noticed that my hands were really hurting. They felt weak and stiff. The joints hurt. Like with any other symptom you write it off as something else. As the months have progressed, the pain has been spreading through the rest of my body. In the last week I have been in debilitating pain each morning when I get up. My genius husband (and I do say that with much love) said, "Maybe it's your medicine?" Ding-ding-ding...we have winner! Why it never occurred to me that I could be experiencing side effects is beyond me. Perhaps it's the brain damage that I suffered from chemo...and I'm serious when I say that.

I did a little research and sure enough one of the "contact your doctor if you experience this" side effects is muscle and bone pain. I have a call into my oncologist to see what he recommends. I am due to see him in July for a follow-up on my vitamin D levels. I didn't post about that before, but mine were extremely low. This is bad when you are fighting off osteoporosis due to a hysterectomy at 33. He has me on a mega-dose of D as well which could also be causing me the pain.

**My doctor just called and wants to see me tomorrow. I don't know if that's encouraging or should make me nervous.

Anyway, I've really been thinking about taking this aromatase inhibitor. I've never been big on taking medicine and I am wondering if it's really necessary. I know I will have a fight on my hands with my doctor--aren't they all hard-wired to prescribe medicine we should be taking? Ed and I talked about it though and unless my doctor can give my some very compelling evidence to continue taking it I don't think I'm going to. It is "helping" prevent recurrence, but what is it doing to the rest of my body. I aggressively treated my breast cancer with chemo and bilateral mastectomies. I even had an elective hysterectomy so that I wouldn't have all of that estrogen floating around in my system. I'm trying to continue fighting this disease but at what cost? If the effects of this drug are manifesting itself in debilitating bone pain what else is it doing to my liver, kidneys, and brain that I don't feel? How many years is this drug adding to my life or worse taking from it?

We'll be discussing this in tomorrow's meeting. It won't be pretty and I can predict that I will probably be looking for a new oncologist before it's all said and done.

To be continued tomorrow...

Are You Kidding Me???

Since I have now had a hysterectomy my oncologist prescribed me a new medicine. (I was taking Tamoxifen.) Because I am now in full menopause I have to take Aromasin. (Tamoxifen is for pre-menopausal women.) This drug is similar to Tamoxifen. It basically does the same thing in my system, but studies indicate this new medicine is better at preventing recurrence (according to my doctor). Here's the big difference though...I can get Tamoxifen in a generic form which costs me $5 after insurance. My new medicine doesn't have a generic equivalent. I pay $40 a month after insurance. This medicine without insurance would cost me $352.88 a MONTH!!! That is CRIMINAL!! Is this stuff made out of some rare chemical compound found in the deepest jungles of the Amazon??? Probably not...it's probably basic stuff that is easy to manufacture. So basically cancer patients are being ROBBED in order to stay alive! Hell they make more money treating us for cancer so I guess if we can't afford maintenance medication then we will relapse thus causing further needed treatment which will make the medical industry MORE MONEY!! I'm not one for conspiracy theories but this has CONSPIRACY written all over it!! This is why cancer is never over for cancer patients. We deal with it daily in some form--some days it's emotional, others it's physical....today it's financial.

Relay For Life

I am participating in the American Cancer Society's Relay For Life this year. Our church put together a team and I am excited to be a part of it. We will be walking on June 13th-14th. I am not going to aggressively seek donations like I did for the 3Day last October. There is no minimum fundraising requirement. I just ask that if you feel led please give a donation to help support this cause. Every dollar raised gets us closer to ending this horrible disease. Be a part of the cure today and make a donation.

There is a link to my personal donation page on the right under Relay For Life.

Thanks for your continued support!

One week post-op

One week ago today I had a complete hysterectomy: uterus, ovaries and cervix. Apparently I had two cysts on one of my ovaries (who knew?) which was sent to pathology just in case. The entire procedure was done laproscopically. I highly recommend it. The worst part has been my belly button. There is a one inch incision coming from the center of it vertically running downward. The incision isn't that bad it's just really sore. Apparently they really manuevered that scope around in there and now I'm paying the price for it. I also have 2 tiny incisions on either side of my abdomen where my ovaries used to be. It really was a piece of cake. I stopped taking the heavy pain meds on day 3 and stopped taking all meds by day 5. I'm still a little tender in the middle, but feeling great otherwise.

So the burning question...menopause symptoms??

Yep, I had my first official hot flash on day 4. I recognized it for what it was quickly since I had so many during chemo. Thankfully I haven't had many more yet. I have already found that I'm having a hard time regulating my body temperature at night. I had the same problem during chemo. One minute I'm hot and the very next minute I'm cold. Hopefully this will stabilize as it's quite annoying. I at least haven't had any night sweats yet--those are brutal.

So all in all, it's been a good experience if you can say that about going through "the change" at 33. I go in for my follow-up appointment on Wednesday, and then I meet with my oncologist on the 18th to start a new medication to help prevent recurrence of breast cancer.

I am hopeful that this blog will be stagnate for a while again as life returns to normal issues that don't involve cancer, genetics, recurrence and testing. Thanks for all the prayers and support. You means the world to me.

I feel a bit like this guy

I'm beginning to feel a bit like this guy. I feel like I'm full of parts that have to be removed.

I went for my pre-op appointment this morning. Yep, it's here already--complete hysterectomy next Monday. I'm only nervous from the "it's major surgery" aspect, but I'm remarkably calm considering the last remnants of my womanhood are being removed.

I'm just ready to get on with it. I want to get this behind me and hopefully forget about cancer/mutant genes/recurrence for a good while. I'm hoping the recovery goes as well as my c-section recovery did. I thought that was a piece of cake. Keep your fingers crossed for me.

I should be in the hospital just one night. I'll try to post an update when I get back home on Tuesday.