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!