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!



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