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PET scans Archives - Denise Neish

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/

May 2014 PET scan results

Posted by | PET scans, Thoughts, Updates | No Comments

Thank you to everyone who prayed for me to have a clear PET scan. I got the results today, and it all looks good for the most part. But I do wish these things would be more conclusive. There does not appear to be cancer anywhere, but there is one little spot that is questionable. It is in the sacro-iliac bone in my lower back. I have to go back for another scan in two months to follow up on it.

To be honest, I am almost certain it is okay. I know that it is possible for the scans to show stress in the bones, and I did a hard run outside on Saturday (2 days before my scan), so my guess is that is why there appears to be some action going on in that area. I’m not just saying this, . . . I really do think it is nothing.

We have dealt with a questionable PET scan before, and everything turned out fine. It just means that I will have to wait until July to be 100% confident that my body is as healthy as it feels.

Until then, I’m pleased to announce that I have now been in remission for 2 years, and I will assume that is going to continue until I hear otherwise. All is well!!! Love you guys!!!

PET scan results in!

Posted by | PET scans, Updates | No Comments

PET scan results in!

Written Nov 5, 2013 9:07pm

Yesterday was PET scan day.  I will admit, I dread it each time!!  I really felt like this would be fine, but if I’m ever wrong, obviously that is a huge life-changer for us, and I know all too well what battling cancer is.I had Kevin, the guy who has done almost all of my scans.  I always feel like I’m seeing an old friend when I see him!  He’s this big Missouri guy with a genuinely kind personality.  He always treats me well and lets me look at the scan at the end.  He has always been optimistic for me, even the first time when we looked at the scan together and it was obvious there was something going on.  I remember he told me that he couldn’t read the scan for me (although, of course he could, he just isn’t supposed to.)  “But”, he said, “if it is cancer, you just stay positive.  It’s amazing how much a positive attitude can help.  You stay positive no matter what the doctors say!”  Then he told me about his dad beating some other type of cancer that was really advanced.  I will always remember his optimism while I was so afraid and in such despair.  What a great guy!Anyway, Kevin was there again, and he remarked how incredible it was that I was doing so well having been diagnosed with stage four breast cancer.  He said, “I can’t wait to look at this scan!”  And I said, “Me too, ’cause it’s going to be awesome!!” Read More

Next PET scan scheduled

Posted by | PET scans | No Comments

Next PET scan scheduled

Written Oct 7, 2013 4:39pm

Things have continued to be great for me, other than that I can’t run right now due to my legs healing from stress fractures.  My next PET scan was scheduled today.  I will go in on November 4th and my scan will be read within a few days.  I will post my results when I get them. I feel optimistic that I will continue to enjoy good health.  I am about a year and a half in remission now, and the first five years are really critical.  If I can make it 5 years in remission, it is much more likely that the cancer will not return.

Great News!

Posted by | PET scans, Surgery, Updates | No Comments

Great News!

Written Jun 11, 2013 1:05am

So after my last PET scan, I was left feeling worried about that lymph node in my neck that was questionable.  I talked to the doctor about it and we decided to have it removed and tested rather than wait and repeat a PET scan soon, which really probably wouldn’t answer our question anyway.  We needed to really know if it was cancer or not, and so we decided on a little surgery.

Last Tuesday I went under general anesthesia and had 8 lymph nodes removed from the left side of my neck.  (I guess they took more out to make sure they got the correct one.)  We waited a couple of days for the pathology, and received the call on Thursday.
I was so relieved to hear that there was no cancer in those lymph nodes.  I really had been trying to put it out of my mind, but I’m so glad we got a definitive answer and now I won’t have to wonder if that lymph node was malignant or not.
I am sooooo sooooo grateful that I can just continue to be healthy and not in treatment, or worrying about cancer.  One more scar, but now I have peace of mind!!
Looking forward to running the AF Canyon Half Marathon this Saturday!

May 2013 PET scan results

Posted by | PET scans, Updates | No Comments

May 2013 PET scan results

Written May 17, 2013 3:38pm

I had my 6-month PET scan last Friday and this morning got the results.  Overall it looks great, but it is not quite as definitive as I was hoping.  Basically there is a lymph node on my left side of my neck under my jaw that is a bit “iffy”.  It has a slightly higher metabolic rate, but it is probably just “reactionary” which means that it is because of a slight infection in my body.  The oncologist thinks it is probably nothing, but wants me to do another PET scan in 3 months just to follow up on it.
I think it is probably fine too.  I feel great, and am getting ready for a half marathon in a few weeks.  Honestly, I have just learned to live with a bit of uncertainty, basically thinking that we probably got rid of all the cancer, but never really knowing for sure.  So this is not something that is any different than that!!
I am happy about everything else in my body looking great, and am not too worried about that lymph node.  I’ll assume it is okay unless I find out otherwise in August.  And if that is the case then we will cut it the heck out of me and be done with it!!!  ;)
Love you guys!  Thanks for the prayers!

PET scan results Nov. ’12

Posted by | PET scans, Updates | No Comments

PET scan results Nov. ’12

Written Nov 7, 2012 4:02pm

Last Friday I had my 6-month PET scan.  Branden went with me, and I drank the nasty stuff sitting in a dark room for 90 minutes, and then lied still in the PET/CT machine for another 30 with my right arm numb the whole time!!  =)

I didn’t ask to see the test after because I felt good about it, but didn’t want to risk seeing something questionable in the study and worrying about it all week until getting the results.  I am scheduled to go in tomorrow morning to get the official PET scan results, but the doctor was able to look through it today and had his nurse give me a call so that I would not be worrying until tomorrow morning.
Everything looks great!!  There is still evidence in my bones of where the cancer was, and some effect from the radiation, but it does not look like there is any cancer there.  I am so happy, grateful, and relieved!!!
Thank you so much for those who prayed for me.  I love you all!!!  I am bawling as I write this!  My heart is full of gratitude that God has seen fit to give me more time on this earth to be with those I love, and those who need me right now.
I will have another PET scan in May, but until then, I will live my life and not worry about my health anymore!!!!