Friday, October 29, 2010

Kim's progress

I need to post more often, because I can't keep everything that's happening in my head for too long!

As mentioned in my last post, I was started on an oral chemotherapy agent called Xeloda a few weeks ago. Two weeks on, two weeks off. Even though Dr. Green seemed very thorough about what to expect as far as side effects, I forgot to ask her when these side effects would appear. So the first week, I felt fine, having only the occasional softer stool. Which turns out to be fine, since I normally tend toward the other end of the spectrum (tmi, I know!) I ate some really hot baked potato soup and burned my tongue, or so I thought. But that feeling of having burned my tongue wouldn't go away. It was like a mild numbness of the end portion of my tongue. My lips feel a little chapped, and they have a strange light-purplish tint to them. Regardless, I'm thinking, I. am. awesome. I can SO handle this. Maximum dose, no problem for me. The energizer bunny in me can keep a-going and going!

And, after only ONE week on Xeloda, I can swear that the palpable tumors on my left flank are smaller. It's amazing and hard to believe, but they really feel smaller already! I have Danny check, and he says "maybe." But I can tell, since I'm the one checking them way too often! I am naturally encouraged by this. It is awesome, and to me, miraculous! How can a drug kill cancer cells, and yet I am still living life as usual?

Second week, still doing pretty good! I can feel some mild discomfort in my hands, mostly in my thumb and fingers. Not so much the palms, which is where I had read it would be. Totally tolerable, though, and the skin on my hands & fingers is intact, but just a little dry. My feet are fine, no problems there. Near the end of the 2nd week, I am noticing some increasing sensitivity in my mouth and lips. I have to switch to Kids Crest, because my regular minty grown-up toothpaste feels too harsh. I notice that carbonated beverages are starting to irritate my tongue and lips. Dr. Green had instructed me to call and stop the Xeloda if I have more than 4 BM's over my usual daily number. I happen to reach that lovely milestone on my last day, but it's time to stop the Xeloda anyway, so I am not concerned.

I have now reached my "off" week, after taking Xeloda (4 tablets, twice daily) for 2 weeks. The night after my last dose, I go to a football game with my kids and have my usual game snack of nachos & cheese. I am shocked at how much burning this causes in my mouth, and even in my throat as the food & drink goes down! Understand that I pretty much live for spicy foods! Usually things can't BE too spicy for me. The Diet Coke I got with the nachos is now seriously burning my lips, tongue and throat. Clearly I have to make some changes!

I am now thinking "whew!" I have survived the 2 weeks on Xeloda and surely the side effects will be getting better during this one-week break. But this doesn't happen. I avoid too-spicy foods and carbonated drinks. I still use Kids Crest. I am unable to smile fully because when I try, it feels like my lips might rip apart. They are tight and discolored, and I notice some ulcers forming just inside the lips. Nothing a bit of lipstick can't conceal, right? I am having to constantly moisturize my lips with Vaseline Lip Therapy or ChapStick, but nothing seems to relieve the dryness. The ulcers are causing an increase in salivation which is just plain annoying. And when you think about your mouth watering, it makes it water even more! Trying to psyche myself out of this vicious cycle, and I'm feeling like a crazy person. Don't think about it, so it will stop. You are making it worse on yourself since now you are tensing up your mouth which is causing more irritated areas inside. Relax, Kim. Relax your lips and mouth. This seems to work. By the end of my "off" week, things are looking up, somewhat. I have a small crack in the skin of my thumb, which I have self-treated with Neosporin and a band-aid, to prevent infection.

It's three weeks since I started Xeloda, and it's time for a check-up. I first meet with Dr. Green's nurse, and I tell her of all of my side effects. She totally nixes the Neosporin/Band-Aid fix, and recommends Udder Butter, or something similar, for my hands. The idea is to prevent skin breakdown before it happens, by using this cream originally intended for use on a cow's udders. Lovely! The nurse also recommends that I use a baking soda & water solution before and after every meal in order to neutralize the acids in my mouth and prevent irritation and discomfort. By this time, though, I am feeling a little better and I don't think I need the baking soda swish at this time. Too bad I didn't have that information after the nachos & Diet Coke incident!

I see Dr. Green, and we discuss side effects, drug tolerance, and of course, the fact that my tumors are palpably smaller. She looks and feels, and agrees! We are all (Dr. Green, Danny and I) very excited. My blood counts are good. When we ask Dr. Green about my tumor marker levels, she say's "They're cooking." Oh my god! Danny and I completely deflate, thinking that she meant they were way-outta-sight high! She immediately clarifies that she meant they were not yet available. Talk about an emotional rollercoaster!

We also discuss the treatment plan. I ask if she still wants to start me on Avastin (an IV chemo agent) since the Xeloda seems to be working so well. She does. She explains that studies have shown them to work really well together. I'm all for it, of course. She's the doctor and I'm at MD Anderson, and I will do whatever they tell me to do. She wants to lower my Xeloda dose to try and moderate its side effects to a more tolerable level. While in my head I don't want to lower the dose, since the drug is working so well, my body is saying, yes, let's try the lower dose. I feel like I have failed at some level. I want the maximum dose, I want the cancer to die and die big-time. I think that Dr. Green can sense my feelings of inadequacy. She explains that she hasn't yet had a patient that could tolerate the max dose of Xeloda. Guess I won't be the first!

I had my first dose of Avastin and all went well. It's causing some mild fatigue, but I don't have time to stop everything in life. Too much to do with the kids and the business. I am finding that I am tired much earlier in the evening than I used to be, so I'm trying to get to bed at a more reasonable hour than usual. This is not always possible, but at least I am sleeping good when I do sleep.

A new side effect that has popped up is eye watering. Can't tell if it's from Avastin or Xeloda ... who knows? My eyes feel a little burny and watery. I've never had allergies before, but I do have a very mild runny nose, so I suppose it may be allergies since there's a first time for everything. I take Benadryl and it doesn't help. I take Claritin and it doesn't help. I try Zyrtec and it helps a little, but not completely. Will have to remember to mention this to Dr. Green. Don't like it -- makes me look sick! It still amazes me that I have this evil disease inside me and no one can tell! But the eye watering, which then causes me to blink more often, is making me appear sick. Maybe not "cancer" sick, but not well nonetheless. Hope this goes away soon.

My new Xeloda dosage regimen is 4 tablets, twice a day, one week on and one week off (instead of 2 weeks on, 1 week off.) Yesterday was my last dose of the one week on. I have 2 blisters on the inside of my lips, and the lips feel tight. I continue to avoid spicy food and carbonated drinks. Kids Crest is still working great. Still haven't felt the need for baking soda swishes -- guess my dietary changes have helped with the burning. My feet are now very sensitive and somewhat painful to walk on. My hands are tender. It's hard for me to open bottles, packaging, etc without having discomfort, so I ask for help a lot with those things (since I am rarely home alone!) I am using Udderly Smooth (similar to Udder Butter) on my hands at bedtime, and this has helped keep my skin intact, although my hands remain pretty dry throughout the day. It's hard to keep your hands constantly moisturized when you're working, typing, etc and washing your hands all day long. All in all, I think things are going well. The way I feel at this time, is that I can tolerate this new dosage... if things don't get any worse. We'll see what this next "off" week brings, and the following week "on."

Sunday, October 10, 2010

Love every minute of life!

My name is Mary, I am 46 years old. In Dec 2009, I felt a small lump in
a week, I went for my Mammogram on Dec. 30th, 2009. They took a lot of
pictures, I was moved from the big waiting room to a room by myself. I had
a feeling it was bad but still remained optimistic. They wanted to do the ultrasound. The Radiologist said she was done with the armpit but wanted to look at the one in the breast. I didn’t know there was anything in the breast. She showed
me the difference between the armpit and the breast. She said the armpit looks
Fibrocystic but the breast has characteristics of breast cancer. I left and came back 3 hrs later and did a needle biopsy on both areas. On January 4th, 2010 (had to wait 5 days because of New Years Eve) I got the call that the armpit was a cyst but the Breast was cancer. I couldn’t believe it I did not have breast cancer in my family. The next few weeks were a blur, surgeon consult, MRI, lumpectomy. I went for Surgery Jan. 15th 2010, it was a lumpectomy. The tumor was only 6mm and all margins were clear, no lymph node involvement. We were all very excited until a few
Days later when I realized I have triple negative breast cancer. Triple negative is a rare Sub type of breast cancer that only affects 15% of breast cancer diagnosis. It is very aggressive, high recurrence rate, and usually happens before menopause. When I realized my only options were chemo and radiation, I decided to do both. I did 4 rounds of chemo starting with T/C. I had a bad reaction to taxotere and had to stop getting it. I started taking A/C for 3 more rounds. Losing my hair was very difficult for me. I didn’t realize how vain I was till I was bald. Chemo was very difficult and I wouldn’t wish it on anyone. However, I still worked fulltime and stayed very active with my 3 kids (14, 10, 6) and husband. I ended chemo April 1st and started Radiation May 3rd and ended June 18th. Radiation was much easier than chemo but it still burned the skin and brought on fatigue. I am currently still working fulltime and keeping busy with my kids sports activities. My husband of almost 19 years was so good to me and stayed positive. Some of the things I learned are: stay current on checkups, you must become your own advocate, surround yourself with wonderful, caring people, love every minute of life, appreciate the help that is offered and take it, look at things with a whole
new perspective. I had a hard time watching the people around me at infusion and
Radiation so sick, it broke my heart. Just live life and go get mammograms!!!!!


We all deserve to have a beautiful life

I´m a 33 year old Colombian and my story began last year on July 09 . I was diagnosed with a uncertain behavior tumor (possibly cancerous) on my right breast and doctors were so afraid because my mom died 11 years ago because of breast cancer and the genetic component is important, that´s why they suggested a bilateral prophylactic mastectomy because I didn´t accept to submit to the chemotherapy. My breasts were removed on January and I was reconstructed with implants and bilateral dorsal muscle flap. Unfortunately, my body rejects the implants and I got an infection with a bacteria called staphylococcus aureus that causes a capsular contraction, one month ago the implants were removed and now I have nothing than my skin and muscles in my chest. I have to wait for a year at least to have a new reconstruction. Today I´m a better person, I learned to look at me in a different way, to look at myself as a great person no matter how everyone else see me. I´m eating healthier and I´m taking all good moments with the people around me. We all deserve to have a beautiful life no matter if you have big or small breasts, if you are black or white, tall or short, thin or fat...all that counts is what you have in your mind and in your heart and the way you live your own life. WE ARE ALL FIGHTERS AND WE DESERVE TO LIVE BETTER.
In loving memory of my MOM...

Friday, October 8, 2010

A recent diagnosis...stay strong!

Thank you for reaching out to us. I know a diagnosis like this is not easy, especially at your age and when you have a large family. You will endure and get through this and be stronger. Your kids will help keep things normal for you and love you unconditionally. Prayers to you and your family.


My name is Amber and I am 25 years old. I was diagnosed with breast cancer two months ago tomorrow (08-05-10).. I went for my yearly exam and my GYN found the lump. I have seen so many doctors in the last two months that I am tired of them. I had a lumpectomy on Aug 31st and I am doing okay so far. While I was in surgery they tested and removed all of my lymph nodes under my right arm. Later at my post op visit I found out that the cells that the Pathologist saw in my lymph nodes where not cancer cells. They looked a lot like cancer cells but where not. I have had a very hard time dealing with the fact that I am going to have to have chemo. The only reason that I am being as strong as I am, is because I have 4 wonderful kids that I want to see grow up. It’s hard to believe that I am only 25 years old and I have cancer! Sometimes I do cry and ask why me, what did I do to deserve this? I do know that I will make it through this and after I am finished with chemo and radiation I will look back and say that it is ALL worth it. To those of you out there that are going through the same thing, you are in my thoughts and prayers.

Posted by Amy at 8:21 PM 0 comments
Labels: chemotherapy, lymph nodes, pathologist, radiation
Living proof that early detection and mammograms save lives!

Your grandmother is living proof that early detection does save lives. I am so glad to hear that she is doing well. Cancer effects not just the patient, but the entire family. Congratualtions on her good results!


My stepmother of over 10 years was diagnosed with breast cancer just a few
days before Christmas. She had no symptoms or signs. The cancer was not
found by self examination but from a yearly mammogram. At the beginning of
the year (2010) she went in for a lumpectomy to have it removed. Luckily
it was caught in time before spreading to her lymph nodes! The doctors
thought they had gotten it all but they didn't and she needed another
surgery to have the rest of the cancer removed. Since Jan of 2010 she has
been cancer free!! I'm so proud of her for fighting this battle. Nobody in
our family has experienced anything like this before. It was so sudden and
heartbreaking to find out the news! Our family is now closer than ever!
Thank you for allowing me to share this story.


Monday, October 4, 2010

How Kim kicks off breast cancer awareness month...

It's somewhat ironic that I would be kicking off breast cancer awareness month with the start of new chemo. Here is an update on what's been going on with me.

This week I had my repeat CT scans, ultrasound, and tumor marker levels done to evaluate the effectiveness of Faslodex injections, which I've been on for about 8-10 weeks. What I already knew before this week was that the tumors that have been palpable on my left back have grown. In addition to feeling them with my fingers, I can now "feel" them when I lay down or when I sit with my back against a chair, seat or sofa. Also I've had a mild cough that seems to be elicited by my turning onto my left side. And lastly, I have been frequently failing my own "lung test," which I have been doing regularly ever since I was originally diagnosed with metastatic breast cancer in 2006. (At that time, when I laid on my right side, I was unable to take a full deep breath in. I found out shortly thereafter that my left lung had a "moderate" pleural effusion, and that that lung was restricted down to about half its normal size due to the fluid buildup around it.) In the months following my diagnosis with stage IV, the treatment regimen I was put on was very effective, and all of my metastatic lesions, including the pleural effusion, cleared up. I had no further difficulty in taking in a deep breath, but I always "tested" myself just to self-monitor (I can be psycho like that!) Anyway, lately, I couldn't always get a deep breath in. It wasn't consistent, but it seemed like I had to be in just the right position to make it happen. I knew something was up, especially since I had already gotten my tumor marker results 2 weeks before my scans: they had again drifted upward, this time up from 32 to 40 (normal range is 0-38.)

Thursday was my appointment with Dr. Green to get the results from Tuesday's chest/abdomen CT, chest x-ray, ultrasound of back chest tumors, and labs. As I waited with Danny in the exam room, I told him that I did not have a good feeling about it. Unfortunately my gut feeling was right.

The ultrasound showed that the largest of the three back tumors had grown. The other two had not changed much, however, Danny and I both thought, after seeing them on the screen during the ultrasound procedure that they looked much more prominent and visible than on the first ultrasound... but what do we know?!

The CT scan of the chest showed "an enlarging left pleural effusion which is now moderate in size. The underlying pleura appears thickened, worrisome for malignant effusion with pleural metastasis." So the fluid around my lung is back, which explains my feeling of being unable to take in a deep breath. Additionally it showed enlargement of the chest (mediastinal and hilar) lymph nodes, and also a "new skeletal metastasis in T12" -- the spine. Great.

The CT scan of the abdomen showed some new lymph node enlargement in the retroperitoneal area (back of abdomen,) the same new bone mets @ T12 seen in the chest CT, and the real kicker: bilobar hepatic metastasis. I now officially have breast cancer metastasis to the liver. No longer can I say "Well at least it's not in my liver." All I can say is, THIS REALLY SUCKS!!

It was like I was punched in the gut. Dr. Green took a lot of time explaining what the new treatment plan would be, and she showed us the CT findings on the computer. The plan is now for me to discontinue all anti-hormonal therapy. No more Faslodex or Zolodex. I will continue on Zometa for the bone mets.

I will go on chemotherapy, which I haven't had since my original bc diagnosis in 2000. However, this one, Xeloda, is an oral chemotherapy agent. Great, I get to poison MYSELF, at home! I've read about it already, since Dr. Green had told me earlier that the next step would be Xeloda. I've read that it's an easy chemo, as compared to the big ones like I received 10 years ago, but it's not without side effects. I can expect some diarrhea and most likely "hand and foot syndrome" which is burning/redness/pain of the palms of the hands and soles of the feet. I will not lose my hair, thank goodness for the small things! The dosage is highly individualized. Dr. Green starts near the maximum recommended dose and will lower it gradually based on my tolerance of the side effects. I am to take 8 (gigantic) tablets a day -- 4 in am, 4 in pm. Two weeks on and 1 week off. After the first cycle, I will see Dr. Green to discuss side effects and possibly change the dose. After the second cycle (in 6 weeks,) I will be re-scanned and re-labbed to evaluate effectiveness.

Dr. Green also wants to add Avastin, another chemo drug, to my new treatment regimen. The FDA has recently decided to remove Avastin from the market, which has started a whirlwind of controversy among breast cancer patients who are taking it and having positive outcomes. I can only imagine being on a drug that's working and then having the government step in and say No, You can't have this anymore! The FDA's decision was to be made any day now, so Dr. Green wanted to wait before scheduling my infusion to make sure that they weren't going to pull it. Their decision turned out to be to postpone their decision until December. This is good for me! I am now scheduled to receive my first dose of Avastin at my 3-week checkup.

Avastin is given IV, and it also doesn't cause hair loss. It's not that I'm afraid to lose my hair. It's just that without hair, one truly LOOKS like a cancer patient to rest of the world. Right now, unless I tell people, no one has a clue that I am battling stage IV cancer!

I read some of Avastin's literature tonight, and I must say, I am scared to death! Nosebleeds, headache, high blood pressure, inflammation of the nose, too much protein in the urine, taste change, dry skin, rectal bleeding, tear production disorder, back pain, and inflammation of the skin are the most common side effects. One serious potential side effect is GI tract perforation!! Oh. My. God. If the cancer doesn't kill me, maybe the treatment will!

I pray that I have no serious side effects, and that these drugs will stop the progression of my cancer. Lord, please help me through this. My biggest fear is that something bad will happen, suddenly, and that my life will be abruptly changed for the worse. At least the cancer hasn't spread to my brain...