My latest scan looked great -- that's 4 in a row! I'm still hoping for 40......

The most stubborn tumor in my liver (the only active area) looks better and everything else is stable.

I was surprised that my dental problems showed up on the CT. Some radiologists only comment on tumor size and activity, others also comment on how my bones are healing and some list everything they see. The final recommendation on this report is, "Continue current treatment and see a periodonitist". That was new!

Dr. Kaplan was pleased with the results and said he has a good feeling about how things are going. I'm just guessing, but his "good feeling" might be based on the liver tumor continuing to change, even though I haven't had intense chemo for 8 months. It looks like the Tamoxifen is working its magic.

I admitted to him that I still get a little nervous before each scan but I'll be really worried in May 2013, because Tamoxifen works an average of two years. He said, "You never know. I've seen it work for a lot longer and this morning I saw a patient who was diagnosed with breast cancer and had extensive liver tumors. We've had to change medications a couple of times but it's seven years later and she's doing great."

It's never far from my mind that each scan could be "THE SCAN" that shows a negative change, but most of the time I realize that anything is possible. Not only from the grace of God (keep those prayers coming!) but medical science supports that as well. I'll take it all.

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Happy New Year! We continue to be grateful for the support we've received this year. All of you have a special place in our hearts and we never forget everything that has been done for us.

I am now 7 months post-chemo and dealing with the more long lasting side effects. As I mentioned in a previous post, the Avastin I receive every two weeks has caused my blood pressure to go up, so I'm on a low dose of blood pressure medication. There are also signs that my kidneys are starting to be affected. It's possible to stay at this stage for a long time but it could also get worse, so a new monthly test has been added to my routine.

Although the FDA no longer approves Avastin for breast cancer, Dr. Kaplan still strongly believes in it and thinks the statistics used to discredit it are misleading. Our insurance is still covering it, but we check with them frequently.

I'm not sure what "Plan B" will be if I stop receiving Avastin. At the very least, I'll continue taking Tamoxifen, which is a miracle drug for some patients. Why not me?

Here is a summary of my current side effects and an update on the old ones:

Hair: My hair is growing back and I've even had two haircuts. I don't like wearing my hair this short, and it's not as thick as it used to be, but it's very freeing not to wear a wig (although it takes me longer to get ready to go anywhere). My eyebrows and eyelashes are slowly coming back, too.

Eyes: The problems I was having with tearing went away pretty quickly and my vision has improved.

Nose: I have one stubborn sore that won't heal and drives me crazy! I still sneeze a lot, but not as much as I used to.

Dental: Over the last few months I've had significant chemo-related dental problems. It's been frustrating because in addition to the discomfort, time and money, I'm at risk for something called "jaw necrosis" (which is as bad as it sounds). Unfortunately, that means that the most effective treatment isn't an option. I'll be seeing a periodontist and an oral surgeon because they're quite knowledgeable about the side effects of chemotherapy, but that doesn't mean there will be an easy answer.  My regular dentist thought she saw jaw necrosis on an x-ray, which had me freaked out for a couple of days (it usually gets worse and there's nothing you can do about it), but the endodontist said that although there has been some bone loss, it's not necrosis. I was quite relieved. Amazing what I think of as "good news" these days!

Hands/Feet: My neuropathy and nail problems have decreased significantly, although my nails are still brittle.

Taste: I still have some difficulty with certain tastes and textures, but I've seen improvement there, too.

Arthritis/stiffness: My neck and back are still stiff, but added to that is wrist, finger, hip, leg and ankle pain. At this point it's not constant or bad enough to warrant medication.

Port-a-Cath: In addition to the redness and itching I frequently experience, Dr. Kaplan is starting to be concerned about the scar tissue developing on the skin that surrounds the port-a-cath (which looks like a big button under my skin). Every time I go to the clinic I get a shot to numb the area and the treatment needle is placed next to that. Over time, this has resulted in a lot of needle pokes in a small area. If the scarring gets worse I'll need to have the port moved and placed under healthy skin. That's minor outpatient surgery, but I'm still hoping to avoid it. For now, I put numbing cream on the area before I go to the clinic (which doesn't work as well as the shot but it helps) and I ask the nurses to try to find a new place to put the needle. It's a small area to work with, but so far they've been able to do it.

Tamoxifen/Hormones: I'm still struggling with the hormone/mood swing side effect of tamoxifen. I think the mega doses of Omega 3's/Vitamin D/Vitamin B complex have taken the edge off but if there's any added stress in my day, I have trouble managing it. Just ask my kids. Something I haven't mentioned is that taking tamoxifen makes it easy to gain weight (WHAT? Where did this come from?) and harder to lose it. I've been exercising more but I need to get serious about a long term plan.

Chemo Brain: I still have word finding difficulties and often lose my train of thought. When I'm helping in the boys' classroom, I sometimes have trouble processing the teacher's directions. I feel like saying, "I have a master's degree! I used to be good at this stuff - it"s the chemo!" I'm feeling less and less organized and trying to compensate by writing more and more lists. This helps, but I still don't feel like myself. I'm doing better in so many ways, but it's hard to feel normal when my brain isn't working like it used to.

Fatigue: My energy is much better than it was 7 months ago but I still get tired more easily and if I have a busy day or two, I'll "crash" with a headache, nausea and general aches and pains. No surprise -- that happened a couple of times during the busy month of December.

My next scan is scheduled for the second week of January and I should get the results on the 16th. I'll write another update then.

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I had my "six months post chemo" scan and all is well.   Dr. Kaplan went over the results in detail because he knows I'll re-read the report several times and get stressed if there's something I don't understand.   He always tells me I can call with questions anytime, but he also knows that I don't. 

The report says that there's some activity in my liver, but it looks like either scar tissue is forming or it could be liver regeneration.   A line I didn't like was, "Not likely a recurrence".  Not likely? How about just, "NOT"?  I let go of that worry quickly, because I know if there was even a small possibility that my current treatment of bi-weekly Avastin and daily Tamoxifen weren't working, Dr. Kaplan would change the treatment plan. 

I'll write more soon about how I'm feeling, but I wanted to get the good news out!

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More good news!

Every month I get a cancer marker blood test, which measures the amount of a certain protein that is only produced by tumors.  A normal test result is anything under 39.  Before treatment I was at 1580 and in recent months it's been fluctuating between 60 and 70.  I was thrilled with this improvement and never expected it to be normal. However, my most recent test was 36!  

This test is used as a scale to see how things are going, but doesn't give exact information.   Because of this, Dr. Kaplan said the number might fluctuate a little, but I shouldn't worry if it does.

I'm still dealing with old and new treatment side effects, but I'm thankful that I don't have the more extreme side effects of Abraxane anymore.  I'm getting used to the Tamoxifen side effects, which include daily hot flashes (mostly mild, sometimes annoying) and anxiety. Patients on Tamoxifen are often given anti-anxiety medication but I decided to look into more natural ways to combat how I was feeling. I'm not against these medications (I was on some a few years ago for "post partum blues"), but my system has been through a lot this year, so I saw a naturopath and started taking some supplements, including mega doses of Omega 3's. It took about a month but I believe they're taking the edge off. I'm slowly implementing some of her other suggestions for chemo recovery and general health. 

Although I've been on Avastin from the beginning, my blood pressure suddenly went up a couple of months ago. In fact, it was high enough that I had to skip treatment that week. I'm now on a low dose of blood pressure medication which I will continue taking as long as I'm on Avastin.   Dr. Kaplan gave me 12 refills, so I'm thinking Avastin will be part of my life for a while!

Speaking of Avastin, you may have heard that the FDA removed the approval of its use for breast cancer. We've contacted our insurance company several times but they're still deciding what they're going to do. We do know that Medicare will continue covering Avastin for breast cancer and most insurance companies will follow their lead. We're going to stay on top of it because we don't want to be presented with that bill! We had a scare recently when we received a letter from Dr. Kaplan's office, stating that a bill hadn't been fully paid by our insurance company and we needed to look into it or pay the $55,000 balance. No thank you! We don't know why there was a delay in processing, but it ended up being covered at the rate we're used to. 

Although I feel much better and have more energy, I still get tired more easily than I like to admit and I have to pace myself or I "crash", usually at an inconvenient time.

The arthritis I mentioned in the previous post seems to be getting worse. I'm hoping it stabilizes or I find a way to manage it. Each of these side effects finds me saying the phrase, "adding insult to injury". As if things haven't been tough enough, the arthritis makes me feel much older (Olivia tells me I sometimes walk like Grandma, who has knee problems) and the Tamoxifen makes me crabby. But, it's better than chemo!

My eyebrows and eyelashes have started to come back, which has been fun to see. Although they aren't where I'd like them to be, I feel a little better about how I look without make-up.  And my hair is slowly growing back. Some of it is grey and some of it is my natural color (I've been asked about that). We'll see if it's as thick as it was before -- right now it's hard to believe it will be, but you never know. I"m hoping to stop wearing my wig by early next year. Maybe sooner. 

We're trying to enjoy these last days of a very good summer.  It's hard to believe Olivia will be in 2nd grade and the boys will be in Kindergarten. We're looking forward to the year ahead, which hopefully will include more good news! 

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Quick Update:

I had a scan last Friday and because it was the first scan since I stopped chemo and started the new treatment, I was anxious to get the results on Monday.  It didn't help that I've had some aches and pains in my bones and an odd sensation in my liver.  The (very) good news is my scan was stable and I'm breathing easier today.  There's still one stubborn spot on my liver, but it's small and hasn't changed in a long time. Thank you for all of your prayers and support.

I probably have chemo related arthritis and I'm likely feeling scar tissue in my liver.  It's funny how your perspective changes -- that actually sounds okay to me!  I wouldn't choose it on it's own, but it's much better than hearing my tumors have returned. 

I was thinking last night that if I had to go back to chemotherapy this soon, it would be really hard.  Among other things, my eyebrows and lashes have just started growing back and my hair has barely had a chance. How unfair would that be?

I also realized that even if the Tamoxifen wasn't working, I wouldn't be back to "square one" and probably wouldn't go back to the intense treatment schedule I was on.  Thankfully, I don't need to worry about that for a while.  Good thing -- I'm ready to get back to our busy summer. 

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I started writing this in May, close to one year after my diagnosis and the start of chemotherapy.  The true anniversary has passed, but it still feels like a good time to reflect on the most intense year of my life.  James and I haven't talked to many people about those early days, so I'll start from the beginning. 

Looking back, there were subtle signs that something was wrong several months before my diagnosis.  For example, even though I'd been taking the same exercise class for a few years, it became more difficult.  At first I thought it was because I had a new instructor who used different equipment, but now I believe the tumors on my bones had decreased my range of motion and made the movements more painful.

In April, I started having what I thought were problems with my gall bladder.  The doctor wasn't sure and thought it might be 'tummy troubles", but she also scheduled an ultra sound. I think what she initially felt was my enlarged liver but she didn't realize it.  Given my symptoms, I know that many doctors could have come to the same conclusion, but I've decided not to see her again.  When I finally did have an ultra sound, it showed that my liver was so large and full of tumors, it had virtually flattened my gall bladder.  Before the results, I remember thinking, "It will be so inconvenient if I have to have my gall bladder removed."  Now that sounds like a picnic! 

My doctor was out of town when the results of the ultra sound came in, so I saw a doctor I had never met before.  I know she couldn't have presented this as good news, but because she was young and obviously hadn't done this before, she made it even worse.  I left the office thinking all was lost and I was to blame.  As if things weren't bad enough! 

About that time, my physical symptoms increased dramatically.  My bone pain became unbearable and I couldn't sleep, turn myself over in bed, get dressed by myself or walk very far.  James later said he thought he was watching me die.  I recently found the lists I made during that time, one of things I wanted to get done and one of information I thought James would need to know when I was gone.  The lists are far from complete but I don't spend much time thinking about them. What a difference a year makes. 

The first oncologist I saw seemed to know what she was doing but I felt like a "case" and not a person.  She also said, (are you ready?), "I see people live with bone metastasis for 10 years. Of course, you came a little late."  James and I looked at each other, thinking, "Did she really just say that?"   The truth is, she may be right, but neither of us could believe she had said it out loud.  And Dr. Kaplan said he's seen women do well on Tamoxifen for 20 years, even with as many tumors as I have.  We do have to be realistic, though, because the average amount of time it works is two years.  The good news is there will many options for me after Tamoxifen.  That sounds a lot better than, "You came a little late!"

I knew I should get a second opinion, but my friends also encouraged me, and for that I will always be grateful.  Changing doctors was by far the most important decision I've made.   I'm getting a little emotional as I'm writing, because I know that whatever the future brings, my life is going to be better than it would have if I stayed with the first oncologist.

We were told by one nurse that a second opinion wasn't needed because there's only one accepted treatment plan for Stage 4 cancer.  She even showed me the large book of treatment options that many physicians use. We now know that she was wrong.  Her statements led us to be very surprised when Dr. Kaplan proposed a much more aggressive treatment plan. We already knew he had a reputation for being a fabulous doctor, but we quickly realized we had met someone who truly cared about us.  The day we met him was the day hope was born.

As you can see from this brief essay, we received a lot of bad information and weren't always treated with respect.  Looking back, I can't believe how horrible that was and how much stress it added to an already unbearable time.   That's why when I hear someone has been diagnosed with cancer, I want to help them.  Even if they have a different kind of cancer, even if they're a daughter and not a patient, even if they have a good support system.  I found that there was nothing more reassuring than talking to someone who had been there.  I hope that none of you are faced with this yourselves or with someone you care about, but if you are, please feel free to contact me. 

Within a month of starting chemo, my pain subsided.  It's been a long road and I'm still dealing with some side effects from chemotherapy and adjusting to the tamoxifen (more on that next time), but thinking about the past is a good reminder of how far I"ve come.   I know we should do a little more planning for the future, but after the year we've had, I just want to live for a little while. 

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GOOD NEWS!

My last PET scan was CLEAN.   The CT showed minimal activity in my bones and liver but it was much better than I thought it would be! 

I now receive treatment every other week and the chemotherapy (the most difficult drug) is no longer part of the plan.  I'll continue with the bio-therapy, Avastin. It has mild side effects but I've tolerated it well from the beginning. 

I'm replacing the chemotherapy with a hormone treatment, Tamoxifen, a daily pill that I take at home.   This will reduce the estrogen in my body to almost nothing (my type of breast cancer likes estrogen).   I'm starting to experience some of the side effects, but I'm taking it one day at a time and hoping it's a manageable treatment for me.  I was under the impression that Tamoxifen was only a "place holder" and wouldn't fight the disease but I learned that some tumors respond better to this type of treatment.  It's possible that the remaining active tumors will continue to decrease during this phase.  There's no reason to think this won't work for me, but I'll feel better after my next scan (in three months).

My body, mind and spirit feel lighter.  I know I'll slowly start to feel better and that for now, the worst is over.  It's likely I'll have chemotherapy again but hopefully that won't be for a long, long time.

I've come much further than I believed possible and I know we wouldn't be where we are today without the love, prayers and support of all of you.  I truly believe that you've made a  difference. THANK YOU ALL! We are truly blessed. 

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