The Cold Caps Worked…Post Chemo Hair Update

It is time to update everyone on the final chapter of my cold cap therapy.  In my previous post about this topic I was half way through chemotherapy. I am officially finished with my four treatments of Taxotere and Cytoxan and the cold caps worked!!  I can’t even express how happy I am that treatment is over. I’m six weeks past my last treatment and every day I gain more and more energy. It is such a relief to not have another treatment looming. Now I can focus on strengthening my body and regaining my energy without the stress of worrying about being hit by the Big Mac Truck that is chemo.

bald spotOK, so overall I would say I lost about 15-20% of my hair. It thinned overall and then I had a bald spot at the very top of my head where the cold cap didn’t always sit tight against the scalp.  I simply cover over the bald spot  when I style my hair.  Oh! and something interesting happened during this process that I should share. I had read in the research that many people found shedding became significantly less as the treatments went on. Specifically,  the third treatment was a turning point. Since I had only read this in one research paper I really didn’t pay it much attention. Much to my delight I noticed after the third treatment a VERY SIGNIFICANT reduction in the shedding. I’m posting a picture here that I hope doesn’t gross anyone out.hairballs It may seem a bit weird but I wanted to see just how much hair I lost by the end of chemo. Each time I washed and combed my hair I would ball up the hair that fell out and throw it into a glass jar. A little weird I know….but my curiosity came in handy. The following picture shows just how dramatic the shedding declined as my treatments progressed.  The balls of hair became progressively smaller.

haircutI actually had to get a haircut between my third and fourth treatments.  Had it not been for the cold caps I would not have been sitting in this chair.  I have lost hair everywhere else, including most of my eyebrows and about half of my eyelashes.  I haven’t had to shave for the past three months….which has actually been a nice side effect.

Overall my experience with cold cap therapy has been very successful.  I would recommend it to others.  However, there are a few things to consider before you decide if cold cap therapy is right for you.  I encourage you to read through the literature I have referenced so that your expectations are realistic.  There are three important considerations:

1.  Not everyone will have success with cold cap therapy.  And success is defined differently for different people.   The Dutch study demonstrated that those under the age of 50 have more success than those over age 50.  Also, as more chemo medications are added to the cocktail, results are less successful.   Chemotherapy doses less than 75mg/m2 were much more successful than higher dosages.  Those receiving FEC chemotherapy had less success.  Persons of Asian decent tended to have less success as well.  Once you learn your specific treatment details refer to both the Dutch Study and the French Poster linked to this post to see what your success rate might be.

2.  Some US oncologists may be concerned about scalp metastasis.  Be aware that there is no research study that has proven that scalp cooling increases the risk of scalp metastasis so any concern your doctor expresses are not based on any proven scientific study.  The normal rate of scalp metastasis following patients with high risk breast cancer is .5% overall.  You can review that stat here.  Other studies report a .3-1% occurrence rate…..these are for patients who never had scalp cooling.  Scalp cooling has been performed in Europe for over two decades.  The longest safety studies of patients have been performed there.  This poster, presented by a group of French researchers to physicians in Europe, provides a very good overview of the safety and efficacy of cold cap therapy.   Also, the largest research study done on cold cap therapy included over 1400 chemo patients and was published by the Dutch. You can read about that study here….Dutch Scalp Cooling Registry   You might find both of these resources helpful in your decision-making.

3.  Cold cap therapy is not covered by insurance in the US.  This is sad since it is covered by insurance in many European countries.  If you rent the equipment from one of the US companies the cost for the equipment and the dry ice runs around $500 per treatment at the time I am writing this.  There is an alternative. You can get a big cooler, purchase about 6 gel caps  and put them on dry ice. This DIY approach will require an initial investment of about $600 followed by $100 for the dry ice each time you have a treatment.  However, there is a learning curve when trying to do this yourself and if you mess it up just once then you will lose your hair….so if you decide to go the DIY route I HIGHLY encourage you to do your research on exactly how to use these successfully.  I switched caps out every twenty minutes for an hour prior to treatment, during treatment and for four hours after treatment.  Here is a shot of my hair two weeks after my final treatment.        car shot

Now, onto the next part of the journey….reconstruction!

 

 

Regrowing My TaTas

I’m willing to bet you a cookie that your surgeon, when speaking to you about your reconstruction options, never mentioned there was an alternative to implants and flap surgery.  When I learned about this alternative I asked myself a few questions: Would I be interested if there was a procedure that had less risk of complications, did not require me to lose a key muscle group or have foreign objects implanted?  Of course. What if this same alternative allowed me to regenerate breasts that had sensation rather than being numb all the time?  file0001145434887Sign me up. What if I could create these new ta-tas using my own extra fat cells found on my hips, thighs and tummy?  Bonus! A technique exists to successfully move fat from your hips and put it on your chest.  Women have been asking for this for years but it never worked before now.  It’s a two for one for boobies!  This post is about sharing information if you are facing mastectomy. Information that might help you along your journey….you can’t make informed decisions without being fully informed.

Dr. Roger Khouri is a pioneering plastic surgeon who, early in his career, specialized in breast reconstruction using the latisimus dorsi (a back muscle).  He also used implants but he was really well known for the more complicated flap procedures.  However, he saw the limitations of this procedure, especially for women having received radiation.  So he noodled other options.  Did I mention he is a pioneer surgeon?   Pioneers are thinkers.  They are always thinking about how to make things better.  How technology can be utilized differently to achieve an outcome.  They can’t help it…it is how their brain is wired.  Dr. Khouri has taken a current, well-accepted practice called autologous fat grafting and improved it in a major way.  Plastic surgeons all over the country take small grafts of fat from one location on a body and inject it to other locations like the breast, buttocks and face.  This is very common.  The limiting factor in this process has always been the amount of fat that can be transplanted into an area.  Too much moved into a tight space and the fat cells die.  They get choked off by over crowding and lack of blood supply. Therefore, fat volumes large enough to fill an entire breast have been impossible up until the last ten years. Enter Dr. Roger Khouri of The Miami Breast Center  located in Biscayne Bay, Florida.   I had the pleasure of meeting him for my own consultation prior to my mastectomy.  I don’t remember how I found his website but I’m glad I did.  I spent hours scrolling through before and after pictures of his post-mastectomy reconstruction work.  There were even pictures of women he repaired after they had terrible complications from previous reconstruction work.  I read testimony after testimony of women who spoke about their experiences.  You can read them HERE.  I encourage you to visit his website and take a look, but I warn you, the photos are not for the faint of heart.  Mastectomy and reconstruction are not the pictures surgeons usually put on their glossy brochures.  But the improvements Dr. Khouri was able to achieve are extremely encouraging.   Here is a link to Post Mastectomy Pictures.  Or maybe you already have implants and are not happy with them?  Check out these photos of Breast Implant Removal.

I felt strongly that I needed a consultation in Miami before I made any decisions about the options my surgeons had outlined for me here at home. Dr Khouri NewsThis is a news clip about Dr. Khouri and one of his patients.  Dr. Khouri and his team were great when I met with them.  They answered all my questions, gave me encouragement and explained the process.  You see, regenerating a new breast takes more time than the typical expander/implant route. In standard reconstruction an expander is placed inside your chest and slowly filled with saline to expand your skin from the inside out.  In the technique used by Dr. Khouri, the tissue is expanded with an external expander.  It is similar to a large bra with two big suction cups.  Yes, it looks like a bra Broom Hilda might wear.  Or, if you are a child of the 80’s, something Madonna wore on her Blond Ambition Tour.  This tissue expander is called a BRAVA unit.  I will have to wear this for ten hours a day.  Every day. For twelve weeks.  And that is just prior to the FIRST grafting procedure. There will be at least two and maybe three outpatient procedures total.  I will wear it at night while I sleep.  It will take work on my part.  Weeks and weeks of work.  The BRAVA will slowly expand my skin, but more importantly, it will expand the blood vessels,  nerves and cellular matrix under the skin.  Why is that important?  Because it will be making a nice little, nutrient rich pocket for little baby fat cells to thrive.  BRAVA overcomes the current limitations of autologous fat grafting….the surgeon can harvest more fat cells and graft much more than has ever been successfully done before.  Using the old technique only 55% of fat cells would survive.  With the BRAVA expansion an average of 82% of fat cells survive! Dr. Khouri has been performing this technique for the past ten years with great success.  He even does this for standard breast augmentation.  Plastic and Reconstructive SurgeryHere is a link to his latest paper published in Plastic and Reconstructive Surgery, the medical journal of the American Society of Plastic Surgeons.

Now let’s fast forward to the conversation I had with my plastic surgeon at home.  I asked if he knew of Dr. Khouri’s work and he said he had heard him speak at the national meeting of plastic surgeons so he was familiar.  I have to give him huge kudos, we had a candid conversation and I explained that I wanted to move forward with Dr. Khouri in Miami.  He was very supportive and said he would do whatever I needed him to do during my mastectomy to leave me in the best surgical position for Dr. Khouri to do his work.  That is when I handed him my iPhone.  There, in all it’s naked glory, was my left breast circled with permanent green marker showing where Dr. Khouri wanted my incisions.   Then I held my breath.  This is where I thought my surgeon might balk.  Afterall, I was telling him I didn’t want him to do my reconstruction and then I had the audacity to show him a picture of how another plastic surgeon wanted him to perform his work.  My surgeon turned out to be wonderfully supportive.  He just smiled and told me to bring that picture to surgery and he would leave me in a perfect position for Dr. Khouri.  I could have hugged him!  Instead, I encouraged him to look into the surgeon training courses that Dr. Khouri provided every month for surgeons around the world.  Many women would not be able to pick up and go to Miami and someone needed to begin providing this service in our area.  He indicated he would keep an open mind.  He did warn me that Dr. Khouri makes money on the BRAVA system and I should be aware of that.  I’m sure it was a well intended remark. I told him I was aware.  What I didn’t say out loud was that every surgeon who cuts on me makes money doing it, my oncologist who prescribes my chemotherapy makes money on it, the hospital that provides my infusions makes money on me.  My bills, so far, tally over $100,000.  I don’t think there is a person or entity  that does not make money on me.  After all, cancer is very big business when you get down to it.   However, I let that well intended comment slide right off because my surgeon is wonderful and I kept my eye on the prize…significantly less complications, no more implants and normal sensation after all this is done. I don’t start BRAVA expansion until June but I will be sure to provide updates along the way.  Peace, Cynthia

Keeping My Hair Through Chemo

A week before starting my chemotherapy I had a follow-up visit with my surgeon.  As part of our conversation he gently reminded me that two weeks after starting chemo I would lose my hair.  “Doc, I didn’t tell you? I’m not going to lose my hair.  I’m doing cold cap therapy.”  He had never heard of it.  Which is something that I feel compelled to change.   So I humbly invite you to go with me on this journey in all it’s raw, beautiful details wherever they may lead.  I will share it all in hopes that it will provide value to you or someone you love.

My oncologist has prescribed four rounds of Cytoxan and Taxotere  given every three weeks.  As of this post I am one week past my second infusion.  I should have already had the empowering “go ahead and shave your head so you’re in control” moment.  Which I would have totally rocked had I needed too.  I’m happy to say that Mr. Clippers is staying in the drawer for today.  This is a shot I grabbed this afternoon.

Frontal shot one week after second treatmentI still have hair!   I’m not dancing a jazzy jig just yet.  I still have two rounds to go…. but I’m feeling pretty good.  My infusion nurse says she is amazed.  I think my oncologist expected me to be bald at our last meeting.  He asked, “Is that your real hair?”  The real deal baby…YES IT IS!

Let me explain what is going on here.  Cold cap therapy is the technique of temporarily freezing the hair follicles so that blood flow to them is restricted.  If there is no blood flowing to the follicles then they are spared the damage of the chemotherapy drug.  Oh No!  That means I might get cancer in my scalp if the chemo doesn’t go there!  No need to worry sweet Chickadee. Cold cap therapy has been used for the past two decades in Europe and studies have shown that  scalp metastasis is rare and does not happen more frequently in those who use scalp cooling than those who do not.   It was introduced in the US back in the 1980’s and it flopped. Why?  Neither the technology nor the technique were adequate at the time.  So it flopped and we forgot about it. (OK, here is where I send a honkin’ BIG karmic hug across the pond to the Dutch, the Finnish and the French scientists who DIDN’T forget about it….You guys ROCK!)  Scalp cooling is now regaining popularity here in the US and we should have new studies released in the near future.

But you don’t have to wait on US studies since Europeans have been using this technology successfully for years.  There are two companies in the US that provide this service.  Chemo Cold Caps  and  Penguin Cold Caps.  I went with the folks at Chemo Cold Caps.  One of the partners lives in my state, could get me the equipment before my first chemo round and the package included everything I was going to need.  Steve came up on the day of my first treatment and instructed my husband on how to become the Cold Cap Master.

cold caps on headThis is what it looks like wearing the cap.  There are a lot of details about how to manage the caps for the most effective outcome but I won’t go into all the boring details.  I’ll save that for another post if there is interest.  The bottom line is this.  You have multiple caps that are rotated out.  Each one needs to be -20F when they reach your head.  You start about an hour before your first infusion and you swap these puppies out every 20 minutes until four hours after your last infusion.  Start to finish? About 8 hours every time I have a chemotherapy infusion.  Annoying at times but a small inconvenience to the alternative.

Now don’t think for a minute that my hair hasn’t changed in this process….I’m shedding like a wooly dog in high summer.  They told me I would. They told me not to freak. They said everyone does it.  I still swallow hard when I see little wads of hair in the sink in the morning.  The goal here is to have the MAJORITY of my hair at the end of this process.  I was told I had a 90% chance of keeping 70% of my hair.  So far I am definitely on track for that to happen.  The main area where I notice the thinning is at the top of my head.  Crown ProgressionApparently this is very typical.  I am VERY careful not to mess with my hair much at all….especially the first ten days after the treatment.  Anytime I mess with my scalp it gives me a gift of hundreds of broken off hairs.  Why go there?  I wash it the night before treatment and then I don’t wash it for five days.  I use dry shampoo to extend time between washings.  I don’t blow dry it.  I don’t brush it.  I use a really wide tooth comb if needed. So far I’m very happy with the results.

I will continue to report on my progress through the next two treatments, give tips I have learned along the way and answer any questions that you may have about the process.  In the meantime, I wish you peace and healing along your journey.  I encourage you to find ways to calm your worried mind through all this craziness because it will allow your body to help you heal and manage your chemo treatments better.  Cancer can not touch your sweet soul and I’m sending your soul and big, warm, long hug right now.  Peace, Cynthia Continue reading

My Personal Choicepoint

It has been said when a crisis comes into our lives it can often lead to new beginnings.  That pain will drive us down one of two paths….the path of the victim or the path of transformation.  A choicepoint is defined as that moment when we are standing at the fork in that path.  It is that moment in time where we stop, reflect and look for answers.  It is a massive opportunity for personal transformation.

I was recently diagnosed with breast cancer.   Hence, I’m in the bull’s eye of a  big personal choicepoint.  It is uncomfortable.  It is scary as hell.  I’m kicking and screaming and crying and lashing out.  I’m vulnerable. I’m raw.  I’m exposed in a way I have never been before.  The two paths are before me.  I stop. I breath into this choicepoint that is mine and mine alone.  Taking the path of victim hood is not in my DNA.  Transformation is my only true option.  I don’t know how to choose this path exactly, I don’t yet know what it means to move forward but however it unfolds I choose to make it great.  I know I can do that.

For those of you who are members of the BC group of women and men, I will define my specifics.  I had a 3cm tumor that was both locally invasive and had two lymph nodes involved.  The tumor was strongly ER positive and PR positive.  HER2 negative.  Stage IIa.  One doctor excitedly told me it was the ‘best’ kind of breast cancer to have.  Forgive me if I don’t give you a high-five in my excitement Doc.

As of this post it has been only four months since my diagnosis.  I am an optometrist by training.  I treat eye disease not breast disease.  I couldn’t name one chemotherapy drug five months ago.  I thought a drain was the hole at the bottom of my kitchen sink. But I do know how to read and understand medical research and I’m a life long learner.  The way I coped with this diagnosis initially was to read and learn.  Since day one I have read research studies on Medline and Pubmed for a minimum of four hours a day.  Many days I would wake at 8 and read until 10pm at night.  At one point my husband threatened to ‘cut me off’ because  I would read and cry…then cry and read some more.  I found that the more I learned the more empowered I felt.  So I kept reading and learning…..and I will probably never stop.

My training and career in healthcare has helped me learn, through the research, about the biochemistry and biological systems involved in this disease.  I was amazed at the information I was learning.  Things such as an alternative to reconstruction surgery that could rebuild a breast without implants and without rearranging my back muscles and creating flaps.  Or a specific fatty acid I could take with Tamoxifen that would significantly enhance it’s estrogen blocking ability above what it could do alone.   Or something I could get in the habit of doing every day that would significantly decrease my risk of future metastasis.  It also helped me sift through the medical biases that are present in the current traditional medical model.  I have been part of the traditional medical model for the past twenty years so I understand the pros and the cons very well….from an insider point of view.  But when it comes to this journey  I’m throwing off any preconceived biases to discover science supporting complementary therapies that exist which could help me.  I understand that my team of doctors may not be well versed in all the different complementary things I am learning.  They are my specialists and by definition a specialist is an expert on one aspect of treatment.  I shouldn’t expect my breast surgeon guru to also be a master in radiology or an expert in how the mind plays a role in healing.  I see each member of my healthcare team for what they are…and recognize what they are not.  They are absolute experts who will provide great guidance when I need their therapy….they are not the gatekeeper and manager of my overall health.  I alone can do that.   Rule Number One to ALWAYS remember on your journey…..responsibility for your health is in your hands.  Be an active, empowered patient…never a passive one.

In the four short months I have researched about breast cancer I have discovered a GINORMOUS amount of information that women need to know about breast cancer but clearly don’t.  Information that can help them through this journey if they are seeking help.   My goal for this blog is to try to share the information I have learned in the research that hasn’t yet trickled down to the mainstream cancer patient.  Provide information that should, at the very least, spark interesting conversations wit doctors and loved ones.   Every person should make their own choices in their treatment but in order to make good decisions one must have information.   My intention is to share information that will empower others during their own cancer journey and support the transformation into their new life.  Peace, Cynthia