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Chemo Archives - Denise Neish

A Not-So-Gentle Reminder

Posted by | Articles, Chemo, Drugs, Running, Thoughts, Updates | 3 Comments

It was 1:00 AM. I woke up, shivering, in a cold sweat. Something wasn’t right. I got up to go to the bathroom, and then the shaking really started. My head hurt, and I was cold, yet hot.

“Oh no!” I thought. “I have what the kids had!”

Every mom picks up bugs from their kids sometimes, and every mom knows she’s not allowed to be sick, . . . ever. If mom gets sick, then who takes care of everyone else?

Hopefully every mom has an amazing husband, and obedient children, who pick up the slack when she’s not well. But most moms want to do as much as possible, even when they are sick, precisely because they want it done ‘right’.

My dread at being ‘under the weather’ was more than just not wanting to let my family down, though. I was on new chemotherapy drugs, which suppress my immune system, and knew that it could be bad if I got sick. I rationalized that my kids’ ailment only lasted for two days, and so, with any luck, I wouldn’t be down for long.

On day two, after a constant cycle of chills, fever, vomiting, and blacking out, when my temperature reached 104.5, we decided to call my oncologist, even though we knew what she would say. Sure enough, she wanted me to go the emergency room. Even then, Branden and I debated if that was really necessary.

Lab tests showed that I had an infection in my body. I got some IV antibiotics, and was sent home with oral antibiotics. We had done the right thing, now I just had to wait to get better.

Two days later I was still chilling and spiking high fevers. Branden called the doctor again, and she summoned me to Huntsman Cancer Hospital to be admitted. By then, the cultures from my emergency room visit revealed that the infection was in my kidneys and blood. I was septic. This was definitely not what my kids had. I was now in a fairly serious medical condition.

I spent four days in the hospital battling fevers, migraines, stomachaches, and more. After feeling well for so long, this was miserable. My mother-in-law and Branden made sure things ran smoothly at home, while I lay in the hospital, sick, sick of being sick, and lonely.

A few years ago, when I was in chemo, I became quite ill, and was hospitalized for nearly a month. Those memories came flooding back, from the uncomfortable bed, to the view from my window, and the smell of the hospital. Mostly though, I felt sad. I knew I would be home soon, but I missed my family terribly. I reflected on the uncertainty we have in life, and knew I wasn’t in complete control of my health, no matter how much I ran, or ate the right foods.
I began to improve, and knew I would go home shortly, so I reflected on what I should learn from my sick week. At the hospital, I didn’t have the clothes, bed, food, or slippers I wanted, but that wasn’t what mattered. What stung was that I was robbed of time with my family.

There is no thing, accomplishment, or experience that can take the place of the ones I love. This summer I will value the happy time I have with my children home from school. I will play with them, snuggle, be more patient, and appreciate them more. I will never forget that family is my greatest treasure, and there really is no place like home!

Hooray for New Drugs!

Posted by | Chemo, Drugs, PET scans, Thoughts, Updates | 5 Comments

I continue to feel well since my recurrence of cancer in my right iliac last summer. At that time, and after much research, and flying to Houston for a second opinion, we decided that I needed to get on Palbociclib, a new drug that was still in it’s final trial phase. I was a perfect fit for this targeted therapy, which is just a daily oral drug with minimal side effects, and so I began the process of trying to get on the trial.

I decided to take another drug while I went through the process of getting on Palbociclib, because I wasn’t sure how long it would take, and I didn’t want to go untreated for too long. I’m glad I did, because several months later, I still wasn’t on Palbo, and I was becoming more concerned that I would not be able to get on it.

Recently, I was so happy to hear that Pfizer had received FDA approval for the drug I needed. I assumed that meant I would be able to get it because my doctors recommended it for me. I was disappointed to learn that they had changed one little criteria for receiving Palbociclib. It was only for women who had not been on prior endocrine therapy, which ruled me out. I looked for alternative routes to getting access to this drug, and kept running into brick walls.

I went into Huntsman Cancer Hospital a couple of weeks ago for a PET/CT scan and was relieved to find that I still just have that one little spot of cancer, and it does not appear to have grown. Everything is stable, so that is great! I was so happy that my interim drug has been working. It helped me to not feel so anxious about getting onto Palbociclib right away, but I still wanted to eventually get on it.

Well, last week it was confirmed to me that holding out for Palbociclib was the right thing to do, because, surprisingly, my insurance decided to pre-approve me for this drug. I couldn’t believe it! It would normally cost about 11,000$/month, but now it will cost me 5$/month. I think we can swing that! :) I am grateful that despite the long wait, I am finally on the treatment that I felt right about from the beginning. And the waiting has not caused the cancer to grow.

Today I got a blood test, and then picked up my new fancy drugs. I will take two drugs in combination. The Palbociclib alone costs about 500$ per pill, without insurance! I take it for three weeks, then I will take a week off, so that my white blood cell count won’t get too low. The other drug, Femara, I will take daily. Palbociclib is a chemo drug, but the side effects are usually minimal, and it should be something that I can take for a long time, as long as it is working for me. I am hoping that I will continue to feel as well as I currently feel, which is totally great!

Thank you for those of you who continue to ask how I am, think of me, and pray for me and our family. We really are all doing quite well right now and just enjoying life. I feel really grateful for all that I have, for the happiness of my family, and for my health and strength, and the great treatment that is available to me.

 

 

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/

Video for the AF Half Marathon

Posted by | Articles, Chemo, Diagnosis, Thoughts, Updates | No Comments

Video for the AF Half Marathon

Written Jan 15, 2013 10:01pm

Denise’s Story

This is a little video clip that was made for the AF Half Marathon.  This is the half marathon I did last summer.  I like having a little video for me and my family as a memory of this event and what it meant to me at the time.
It is obviously a very brief little summary of my cancer story, and mostly focused on the race they are advertising, but that race really did mean a lot to me, so I was happy to be a part of their advertising for it.
I’m still feeling great and am training for this race again for 2013.  Just thought I’d post this to my caringbridge link for anyone who wants to view it.

Done With Chemo!!!

Posted by | Chemo, Updates | No Comments

Done With Chemo!!!

Written Nov 6, 2011 10:42pm

I don’t know if it has really hit me yet that I am done with chemo, but I am!!!  It will probably be more real for me this Friday when I DON’T go spend the day in the hospital!!

I brought Alec with me on Friday and we stocked up on snacks and brought a Christmas video and some reading and drawing materials, and had a fun day together in the infusion room.  I know it was probably a little strange for him to see me as a patient and to see me all hooked up to the drip with the chemo drugs going into me.
He asked me a couple of times if it hurt.  I assured him that it didn’t.  The nurses were very nice to him, but they did tell me that they don’t like anyone under 12 to come in the future. Good thing for me I am not planning on going back for any more rounds of chemo!!
I was definitely mentally prepared to be done on Friday, but there was a moment of uncertainty after my blood work came back and my white blood cell count was lower than their standards.  My granulocite number was also slightly low.  I had to wait for approval from my doctor to go ahead and receive my last dose of chemo.  I was relieved when the approval came, because I would have been disappointed to have to wait another week to be done.  So now I have to be extra careful this week to not get sick, because my wbc count is low, and I received chemo, so now it is probably going to go even lower.
When I was almost done, the nurses in the infusion room came around and sang me a little song about being done with chemo.  It was very sweet!  They also gave me a blanket as a parting gift.  This is what they do for all patients when it is their last day of chemo.  I have really been treated well at Huntsman, and have made good friends with some of the nurses there.  I will still go up every 3 weeks for Herceptin until next August, so I will still see them, but I had a spring in my step as I left the hospital on Friday knowing that I was done with Taxol!
My PET scan is scheduled for November 29th.  I will also meet with the radiologist next week to determine the plan for radiation.  But in the meantime I have about 3 weeks to recover from chemo and to not be treated.
I am so thankful to be done with chemo and to be feeling well!!  I signed up for a 5K Turkey Trot on Thanksgiving, and am so excited to be getting ready for a race!  It will be my goal just to run the whole thing.  I am very slow when I run right now, but it just makes me happy to think about doing a race again.  I will run with a friend and with my sister-in-law.  I am looking forward to doing things that make me feel like myself again!!
I really love all of you who have been reading my blog and encouraging me through all of this.  Thank you so much!  I am looking forward to getting my PET scan and seeing how the chemo has worked.  Because it was looking good halfway through the summer, I anticipate a good result, but how good, I do not know.  I also want this scan to be clearer, and it should be because we will wait a little longer to get all of the drugs out of my body that can interfere with the clarity of the image.  I will write again after I get my PET scan results on the 29th.
Yay for no more chemo!!!!  =)

Just one round of chemo left!!!

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Just one round of chemo left!!!!

Written Oct 31, 2011 10:33pm

I am so excited to be done with chemo!!  It has been since the beginning of May that I have been either in chemo, hospitalized, or trying to recuperate so I could get back into chemo.  I have felt pretty good during this last half of chemo, but STILL, I will be delighted to be done!!!!

This Friday will be my last day of chemo, hopefully forever!!!  Branden is going to be out of town for work, but I decided to take Alec with me for the day.
I have really tried to shield my kids from all I have been going through as much as possible, but a couple of weeks ago as I was sitting in the infusion room with the other cancer patients, I looked around and thought that it would be a really great experience for Alec to come with me for chemo one time.  He is almost 9, and pretty mature and sensitive for his age.  I think it would be good for him to see what I have been doing when I have been getting treated over the past several months, and for him to see other people going through similar things.  I want him to know that a lot of people are going through hard things, and hopefully for him to gain some compassion.
We will do something for cancer patients this year for Christmas, and it would be good for him to feel some connection to the people we will serve.  Plus, it will be nice to have several hours with just Alec.  I will have him bring a book and some drawing materials and snacks, and we will have a fun day together in the infusion room!
I have had some great conversations with other patients during chemo the last few weeks. When you are in treatment for cancer, the conversations you have with other people going through the same thing is very different than at other times in your life.  I won’t elaborate, but I have been really touched by talking with some people who are very different from me, but with whom I can totally relate!
I have been much more emotional while I have been in chemo.  I don’t know if it is the drugs, or the overall feeling of being so vulnerable that causes it.  Even when I don’t think I am emotional at all, I will sometimes get all teary about some little thing.  Other times I just try to ignore anything that could cause an emotional response so that I won’t get all emotional!  I am not sad or anything.  Really, I have been very happy, but I am just a little bit of an emotional basket case sometimes!!  =)
After chemo this Friday, I will wait 3 weeks and then get a PET scan. About a week after that I will begin radiation for 6 weeks.
I had another mugascan this week to check my heart, and it is looking great!  It started at 64% at the beginning of chemo, and got down to 49% over the summer.  It increased to 50%, and now it is back up to 55%.  That is really good news, and shows that the damage done to my heart from chemo is not permanent.
We took our kids trick-or-treating tonight and had a lot of fun.  It was hard getting everyone to bed though, because they were bouncing off the walls after all that candy!!

Catching up

Posted by | Chemo, Updates | No Comments

Catching up

Written Oct 14, 2011 11:07pm

I didn’t update last week, but it was just chemo as usual!!  I did get a cold and was a little worried that my wbc count would be too low for chemo, but all was well!  I still haven’t gotten rid of my cold, but I was able to do chemo again today, and now I am down to a grand total of 3 rounds of chemo left!!!  Woohoo!!  I have been able to run/walk most days this week, and have felt pretty good despite my cold.

After chemo we will wait a few weeks and do another PET scan to see how things are looking.  Then we will need to make some decisions about how many areas to radiate.  Radiation can only be done once in a certain area, so if I need radiation in the future in that area I won’t have that option if I do it now. But I think that if I we see any cancer that is visible on the PET scan I will probably opt for radiating that area.
I need to get some further opinions, and think and pray about it before we decide.  Even if we don’t see anything visible on the PET scan, it would still be tempting to radiate the 3 areas where the cancer spread to my bones just to make sure we get rid of it, but I don’t know if that is the smartest thing to do or not.  It is standard procedure to radiate the original area of the cancer and lymph nodes that were removed already during surgery, so no decision needs to be made about that.
Then I will be in radiation for 6 weeks.  It is every day, Mon-Friday, but doesn’t take as long as chemo, and I won’t have to drive as far for it.  Right now I am just looking forward to finishing chemo, and getting the PET scan.
An interesting thing happened a couple of days ago.  I was called randomly by a girl whose sister lives in our neighborhood.  She is doing a segment on a Utah show called “Good Things Utah”.  She wanted to talk about breast cancer because October is breast cancer awareness week.  She remembered that her sister had told her about me a few months ago, and gave me a call.
She wants to put a face with her little story on breast cancer, and will be highlighting me on the show next Friday.  That will be a week from today at 10AM on ABC channel 4 for those of you in Utah who may be interested in it.  She said it will be really short.  I will probably sit in the audience, and they will show a picture of our family and briefly tell our story.
Alright, I am going to bed now!  Countin’ down baby!!  Only 3 more!!!  =)

The light at the end . . .

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The light at the end . . .

Written Oct 3, 2011 10:31pm

I now have only 5 weeks of chemo left. I am still feeling pretty decent, although I do feel the fatigue sometimes.  I was able to receive treatment again last Friday, and it seems that I will continue to be able to be treated because these Neupogene shots that I get during the week are doing the trick of keeping my wbc count up.  I will definitely have a party when chemo is over!!!!

I have been growing some hair back.  For some reason I have not lost my hair with the Taxol, and so my hair has been growing back slowly over the past few weeks.  I now have a soft covering on my head that is about a centimeter long.  I have even been wearing it out without a hat a lot lately.  It looks really really short, but I am tired of always wearing hats and scarves!  I am just trying to pretend that I am stylish enough to wear my hair that short intentionally!!
I got a speeding ticket this week.  Branden got one a few weeks ago, so I guess we have both been officially welcomed to Utah now!  That was the first ticket I have gotten in 20 years!!  (Not that I’ve never been pulled over all that time.)  Apparently my chemo look and my pitiful driver’s license picture didn’t elicit much pity from the police officer!  You would think that all this cancer stuff would at least be good for getting me out of a ticket!  But the good news is that I didn’t really care!!
  My ticket was in American Fork, which is the same place that my wallet was stolen earlier this summer.  I was thinking later that I should have told the officer that since they never recovered my wallet (despite the fact that I filled out 3 different police reports for locations that my credit card had been used and where there were cameras) that maybe he could let me out of the ticket and we could call it even.  I wonder if he would have gone for it?!!
Branden and I are going to celebrate our 14th anniversary this weekend. We are going to stay overnight up in Salt Lake and do some fun stuff downtown Friday night. I am so grateful to have such a wonderful husband.  I love you Branden!!!