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Radiation Archives - Denise Neish

Trip to Houston for Some Answers

Posted by | Chemo, Diagnosis, PET scans, Radiation, Running, Thoughts, Updates | 10 Comments

After much planning, and arrangements that included my mother-in-law and several other great friends, Branden and I spent the week in Houston, at MD Anderson, trying to figure out the best plan for me in fighting my cancer recurrence.  We met with a doctor who was recommended to us by multiple people, and I feel like he lived up to his reputation.

When I first found that the cancer had returned I went to my old oncologist, Dr. Buys, at Huntsman Cancer Institute in Salt Lake. She really is wonderful, and has been an incredible partner in battling my cancer thus far. I don’t think I would have had two fabulous years in remission without her wise advice and genuine concern for me. But when we spoke with Dr. Buys, she didn’t suggest what we were expecting.

Let me briefly explain metastatic breast cancer. It started in my breast originally, but because it travelled to my bones, that means it has gotten into my bone marrow and found a good landing place in my bones where it grew. At first the cancer was in my spine and pelvis. After all the treatment I received three years ago, we no longer saw evidence of cancer in my body, but doctors mostly agreed that it would pop up somewhere again. We were hopeful that they were wrong, but knew it was unlikely.

Now, eradicating my one visible tumor with radiation should not be a problem. The problem is that now we know the cancer is still circulating in my bone marrow, blood stream, etc., and will land and make more tumors if we don’t treat it systemically (which means my whole body, not just the one spot). That was why we assumed that Dr. Buys would recommend chemotherapy again, but this time she did not think that was the best idea.

According to her, the chances are “miniscule” that I will completely eradicate the cancer, and my best bet right now is to try an approach with less side-effects than chemo so that I can continue to feel well. My type of cancer is stimulated by estrogen, and so trying a new estrogen blocker is one method of holding back the cancer for a while. Many women with metastatic breast cancer switch from one estrogen blocker to the next over time. One drug will work for some time, and when that stops working, sometimes another one will work. This method can go on for many years if you are fortunate, treating the cancer as sort of “chronic” rather than “terminal”.

I have read a lot over the past three years, and I know that this is the recommended treatment plan for someone in my position, but it has been hard to wrap my head around that. I asked Dr. Buys for her suggestion on a more aggressive treatment plan, such as chemo, and she said she would really try to talk me out of it. “Why would you want to do that to yourself?” were her exact words. I respect her opinion very much, but left her office feeling a bit disappointed. We decided to go to MD Anderson in Houston to get a second opinion.

It was a few weeks before I was able to get the appointment with Dr. Valero, but I felt the wait was worth it. I had some time to think about what Dr. Buys said in the weeks leading up to my appointment with Dr. Valero, and felt that if he suggested the same type of treatment as Dr. Buys suggested, I should listen. When he read my medical history and came to speak with me he started off by basically giving me a much needed pep talk.

Dr. Valero stated confidently, “You can live with breast cancer.” He let that sink in for a minute and then said, “You have lived with breast cancer for a long time now.” Just as I was thinking that three years wasn’t really that long, he said, “You had it many years before you were diagnosed, or it wouldn’t have been at the stage it was when it was discovered.” Then he asked me if I had any pain. When I said no, he said, “See?! You wouldn’t even know you had cancer now if we did not see it on your scan. You can run, you can take care of your children, and you can have an active lifestyle with cancer. So, . . . what we need to do, is keep you feeling well for a long time, and give you a drug that will stop or slow the growth of the cancer.”

He then told me that we are at a good place. My cancer is not causing me any problems, and we have several “tools in the toolbox” right now because I have not had many different drugs yet. After discussing some of the hormone blockers on the market right now, he recommended that I try to get into a trial of a new type of drug called a CDK inhibitor. It does not just block estrogen, but actually destroys estrogen receptors. It has had some amazingly effective results in early phases of experimentation. It is usually used in combination with an estrogen blocker, and so it can be a strong line of defense. Some early results are showing a much longer duration of time before it stops being effective than just the estrogen blockers alone. He said, more than once, that if he were in my situation, he would try to get that drug. The CDK inhibitor was something that Dr. Buys had suggested, but when she couldn’t find an open trial right away, she just moved along to the idea of an estrogen blocker alone. But basically they both were suggesting the same thing.

I trusted Dr. Valero’s advice, but could not leave without asking, “So, do we not ever try for a cure then at this point?”

Dr. Valero quickly raised his finger and said, “I did not say that!” Then he said, “If we have good success for a long time with this approach, and we see that tumor shrink, and no new tumors appear, then maybe we will zap it with radiation and hope to get rid of it completely at that point.” I liked his answer, even if he was possibly patronizing me a bit. It has taken me a long time to come to an acceptance of a treatment plan that is not with the intent to cure me, but I can accept this approach much easier if I am still allowed to hope for a cure at some point, . . . and I do.

After several phone calls, I am now likely able to get into a trial at Huntsman Cancer Institute of the CDK inhibitor, plus two other estrogen blockers with it, starting in September. I feel so good about this plan, and that was what I was praying for; something that felt right.

“Living with cancer” is something I have done for a long time, and I can continue to do it for a long time if necessary. And if “living with cancer” is necessary, you can bet that I will live the heck out of my life! I will be the healthiest person you know with cancer, and I will plan on setting some sort of record for the person who has lived the longest with metastatic breast cancer! ;) And really, I will just do my best to live with whatever comes my way, which is all that any of us can do anyway.

Thank you for those of you who helped with our kids while we were gone this week, and for all of you who have sent encouraging messages or who have prayed for us. I am grateful for so many truly wonderful people in my life, for feeling well, for a husband who loves me enough to take me all over for the best treatment, for my sweet kiddos, and for a relationship with my Heavenly Father. I am blessed.

Round 2

Posted by | Chemo, Diagnosis, PET scans, Radiation, Thoughts, Updates | 3 Comments

Friends,

We found out about two weeks ago that my cancer has returned. This time it is only in one small place in my lower back, in the iliac bone. Of course we are disappointed that I am no longer in remission, but this is not a huge surprise like the first time either. We have known that it was likely I would deal with this cancer again at some point. We just wished it would have been a longer remission.

Branden and I are still figuring out what my treatment plan will be. I feel great right now, and we are hopeful that I will continue to feel well during treatment. I may, or may not, do chemo. I’m almost certain that I will do radiation to that spot, but there are oral drugs that I may take rather than chemo. We just are not sure right now.

We have one opinion from my oncologist at Huntsman, but have decided that we will take a week-long trip out to MD Anderson in Houston, TX, which is arguably the best cancer hospital there is. We will be going the week of August 18th, (the first week of school for my kids) and I will have all sorts of tests while I’m there. I should come back with the best treatment plan for me, and some peace of mind that we have done our research and received multiple opinions from some well-respected oncologists.

We are really doing just fine. I am optimistic that I will be back in remission again soon. I thank you all for your love, support, and prayers in the past, and ask for your continued prayers. I am so fortunate to have, really and truly, the best family (on both sides) and friends. I am grateful for my faith, my husband, my children, and I feel strong and happy. My life is wonderful. My only complaint is that darn cancer! Hopefully we can get rid of it once and for all this time! I have learned that all I can to do is ‘do my best’. The rest is in the hands of my Heavenly Father.

I won’t begin any sort of treatment until after my trip next month to Houston. We will keep you posted on what we learn when we get back. And don’t worry, we really are doing fine, I just wanted to let you all know since I have shared this with you in the past. Love to each of you!!

Denise

My interview on Clearchannel Radio

Posted by | Articles, Chemo, Diagnosis, PET scans, Radiation, Running, Thoughts, Updates | 2 Comments

Click on the link below to listen to a radio interview I did about my battle with Stage 4 breast cancer. My goal was to offer hope to those fighting late stage cancer. If you, or someone you know, is in that situation, please share or listen, and know that there are survivors out there.

http://www.knrs.com/media/podcast-feedback-with-abby-bonell-Feedback/feedback-with-abby-bonnelldenise-neish-24986769/

Done with Radiation!

Posted by | Radiation, Updates | No Comments

Done with Radiation!

Written Feb 3, 2012 10:24pm

I finished radiation on Tuesday, Jan. 31rst.  I am so happy to be done, and grateful that it wasn’t that bad.  Mostly it just took up a lot of time each day, and so I will be glad to have my mornings back.  It did make me somewhat tired too, but really, not too bad at all.

Wednesday I met with the surgeon who will do my hysterectomy and oopherectomy in 2 weeks.  My surgery will be on Feb. 15th.
During the surgery, they will also remove my port, which will be great!!  For those of you who don’t know, a port is a little hard rubber thing installed in my chest through which I received chemo, had blood drawn, got blood transfusions, got IVs when I needed them, etc..  It is great when you are getting stuck by needles all the time, and it protects your veins when you are having toxins pumped in through your body (chemo), but since I am done with chemo, and not getting my blood drawn nearly as I used to, I decided I wanted that thing out!!  It really hurts sometimes because it is attached to muscle, and it is right where my baby likes to put her head when she snuggles with me, so she is always bumping her head on it!!  Plus it just looks really weird.  I always have to be careful to not wear a neckline on my shirt that will show it because it would probably scare people!!
So when my port is removed I will have to have an IV to receive Herceptin every 3 weeks, and it always has to be in my left arm, since my lymph nodes were removed from under my right arm.  My left arm will probably look like I am a heroin addict or something, but I will just be so glad to not have my port anymore!!
Today I went up to Salt Lake to Huntsman for Herceptin.  I also had a mugascan to check my heart.  Last time my heart had improved and was up to 55%.  I assumed that it would be even better this time.  I originally started out at 64% before I started chemo, and I have been running almost every day recently, so I expected it to improve.  Weirdly, it went down to 51%, so I have to have another mugascan in 6 weeks to make sure it isn’t continuing to go down.
I can stay on Herceptin as long as my heart is strong.  The longest I can stay on it is 2 years, and I would like to be able to continue receiving it, so I need my heart to handle it well.  My doctor said that it is possible the radiation to my spine effected my heart a little bit, and so hopefully it will improve now that I am done with radiation.
Whew!!  My body has been through a lot the last several months, but I am almost done with the major part of my treatment.  I am really excited to get this surgery done, and to recover from it and be done getting treated so regularly!!
I signed up for a 1/2 marathon at the end of June and I am looking forward to getting ready for it!

A New Year!!!

Posted by | Radiation, Thoughts | No Comments

A New Year!!!

Written Jan 13, 2012 10:31am

Hallelujah for a new year!!!  No offense to 2011, but I was not sorry at all to see it go!  In fact, over the past several weeks, every time I thought about the year ending, and a new year beginning, I got this excited feeling inside.  I am sooooo ready for a new year!  2012 is going to be much better than 2011!!!

I am sitting in my usual spot in a big comfy chair at the Huntsman Cancer Center in Salt Lake.  This has been my home away from home, unfortunately, for the past several months.  I only come up here every 3 weeks now for Herceptin and sometimes Zometa.  I don’t really mind coming now that I am not getting any chemo drugs.  It is good to keep in touch with the nurses up here and some of the patients I have become friends with over this past year.  It is an hour north of where I live.  I go to American Fork hospital for daily radiation.  It is only about a 10 minute drive from my house.

Radiation is going fine.  I am feeling great!  I continue to run most days and I am very careful to eat a healthy diet.  Today I am going to get my treatment here, and then try to bust down to American Fork for radiation, and then go home and get our family ready to head down to St. George.  We haven’t visited my sister there for a long time, and it is warmer down there too, so it will be a nice getaway for the weekend.  My kids get so excited to see their cousins down there too!
So, I have been feeling kind of like a tough girl lately.  I think it comes with feeling good, and nearing the end of major treatment.  It’s funny, because when I run on the treadmill in the mornings, before I go to radiation, if I hear a song on the radio that is something about surviving or being tough or winning or something like that, I get this adrenaline rush like when I used to compete in track in college! I am feeling like I am winning a major battle right now.  I know it’s not because of me, but it makes me feel invigorated.  I don’t know how to explain how I feel, but it’s like I am coming out of a long dark tunnel and can finally see the light at the end.
Last April I had to tell my family over the phone about my Stage 4 diagnosis.  I couldn’t hardly talk as I called each person in my immediate family.  I told them quickly that it had spread to my bones and that the doctors had told me I was “incurable”.  I told them that I didn’t want to talk to anyone for a few days.  We were moving to San Diego, and I needed to focus on getting our family moved and making it out here to Utah.
The next day we had people in our house and we were loading up the moving truck and saying goodbye to friends.  I tried to act normal, but a few times I had to go outside around the corner to cry for a minute before I could go back to the whirlwind of people in our house.  In the middle of all of this I got a 3 word text message from my little brother.  All it said was, “kick it’s a$$”.  I laughed for a moment, and I appreciated the message, but I didn’t really feel like that was possible at the time.
Now I am realizing that that is what is happening.  I am “kicking it’s a–“!!  I feel kind of like the doctors lied to me when they told me I couldn’t get better.  That’s not what they intended to do, but they never really told me that I had any hope.  I think that I could never come to terms with that because I always had a feeling deep down that I was going to get better!!
I will get another PET scan 3 months after I complete radiation, and I will continue to get scanned every 3 months for a while, then every 6 months at some point.  I don’t know what will happen in the future, but right now I feel great, and I am so grateful every day for a healthy body.  I am so thankful for love and support from family and friends, and I am thankful to my Heavenly Father for carrying me when I didn’t think I could take another step!!  Life is good, and I am moving forward!

Latest PET scan results

Posted by | PET scans, Radiation | No Comments

Latest PET scan results

Written Nov 29, 2011 10:30pm

Today I spent all day at the hospital.  I got up at 5:45 and left the house at 6:15.  Branden’s mom was kind enough to come over bright and early to be with our kids again.  Man!  What would we do without her?!!?!

Branden skipped work to come with me for my PET scan.  I have been looking forward to getting my PET scan and feeling optimistic about it, but I did feel kind of emotional yesterday as I thought about it and prayed fervently for a good result.
When we got up to the hospital I drank the nasty drink and got injected with the radioactive dye and sat in a dark quiet room for 75 minutes so that my brain wouldn’t metabolize the glucose as much.  Then I got strapped into the big PET scan machine and laid perfectly still for about 30 minutes, occasionally following orders to hold my breath and breath normally.  When it was done I went and met Branden in the waiting room.  It would take a couple of hours for the test results, and we had about 2 hours to kill until I could meet with Doctor “B” (which was next on my long agenda of appointments for the day).  So we went  out of the hospital and got some food and went shopping for a little bit and then went back to the hospital.
Dr. “B” came in and got right to the point because she knew that all we wanted was to know what my results were.  She said that she was very pleased.  There was no sign of any new tumors anywhere, and everything looked good in the breast and lymph node areas.
There were originally two spots on my spine that looked malignant, and one of those spots now looks clear of cancer.  The other spot on my spine and the spot on my left hip look better than before, but there is still something there.  They call it a “lesion” on the bone, and it could be either cancer or healing tissue in the bone where the cancer was.  The amount of metabolic activity in those areas has decreased from my first PET scan, but it is in a gray area and is impossible for them to really know if it is cancer or not.
At first I didn’t know how to take this news because I think Branden and I both thought we would get a more definitive answer about the cancer than this.  But Dr. “B” explained it this way:  Radiation actually works better than chemotherapy for killing cancer.  (I didn’t know this before today!)  But they can’t radiate your whole body because there are too many things in there that would get damaged from it, so they will only radiate very specific areas.  That’s why they usually do chemo first because it is a systemic treatment for the whole body, and can get some stray cancer cells that may be in random places in my body.
So now that we have done chemo and have found out that it has worked in reducing the cancer in my body, now we can radiate those specific areas where cancer was detected.  Then, since radiation is so effective, we have a good chance of getting rid of the cancer in those areas.  So, it is definitely good news!
As for the rest of my body, we will not know if there is cancer anywhere until some time has passed.  We will continue to do PET scans every three months for a while, and then every six months, and if anything shows up or is growing, then we will deal with it at that time.  If not, then after a few years we will know that we probably got it all.  I will just have to get used to not knowing all the answers for a while, but for now, my PET scan results are good, and I am still feeling very optimistic about beating this cancer!
After my appointment with Dr. “B” I went to the infusion room and got Herceptin (which I will continue to get every three weeks until at least next summer), and I got Zometa (a bone strengthener that I will get every six weeks.)  I also got my prescription filled for Tamoxafin, which is an estrogen blocker, and I took my first one tonight.  I wonder how that will make me feel?!
After all of that, we had to race down to American Fork hospital so that I could get my radiation for today.  Then we went back to get our kids and picked up a pizza.  We had a fun evening playing with the kids in the basement until bedtime.  I always miss the kids when I am away from them all day.  Whew!  I am glad today is over!!  Thank you everyone for all your prayers!!

Radiation and Turkey Trot

Posted by | Radiation, Updates | No Comments

Radiation and Turkey Trot

Written Nov 25, 2011 7:33pm

I started radiation on Monday, and I have had three treatments so far.  Radiation is Monday through Friday for about 7 weeks, but this week I did not get treated on Thursday or Friday because of Thanksgiving.  So far radiation is no big deal.  For some reason I was a little nervous about it, but it only takes about 15 minutes once I get all set up on the machine, and of course I don’t feel anything.  It is just like getting an X-ray.

Yesterday I entered a 5K.  That is 3.1 miles for those of you who aren’t runners.  I got so happy when I went the night before to pick up my packet and race number.  My sister-in-law and her friend did the race too.
I am slow right now due to treatment, but based on my treadmill running I thought I would be doing well to be under 29 minutes.  Mostly I wanted to run the whole thing and not walk any of it.  When the race started I just felt so happy to be in a race again!  I let the crowd of people carry me along, but I didn’t want to go too fast because I didn’t want to have to walk.  I didn’t see the one mile mark, but I did see the two mile mark, and my time was 16:19.  I was so surprised that I was running 8:10 mile pace.
During the third mile I was trying to catch a little boy who was beating me, but he started pulling away and I had to give up on him!  I was really tired with about half a mile to go, and had to slow down a little bit, but I got the the 3 mile mark at 23:58.  I couldn’t believe I was keeping an 8 minute mile pace!  Nothing to brag about normally, but I have not been able to run even 9 minute miles on my treadmill for the whole time, so I was very happy with it.  I finished in 24:44.  Much better than I expected.  I really needed that!!  It made me feel so good to feel strong, and to feel like a runner again!!  I am excited to get done with ALL of my treatment and to get a clean bill of health and get ready to actually compete in some races.
My PET scan is Tuesday.  I will start my hormone therapy then too.  I will write again after my PET scan results.