Paxman Cold-Capping Clinical Trial - Our Experience

cabland

Hello All,

(Warning Uber Long Post)

My wife was diagnosed with breast cancer in March of this year and this forum has really been a Godsend so we wanted to "give back" a little by posting our experience with the Paxman cold-capping clinical trial.  (I will also post a link to this post in the larger cold-capping thread).

 

Diagnosis and Treatment

My wife's OBGYN found a lump, and we underwent the usual biopsies, mammograms, breast MRIs, etc.  This revealed a second lump which pushed us from a lumpectomy/radiation option to a double mastectomy.  She had that surgery in late May.  We then headed into chemo late June as follows:

4 rounds of bi-weekly dose-dense AC

4 rounds of bi-weekly dose-dense Taxol

As you can see, this was NOT a "hair friendly" regimen.  Her last chemo treatment was on 09/30/2015 so I guess we are 24 days PFC (assuming PFC means "Post Final Chemo").

 

Paxman Cold Capping

You can find more details about Paxman here: Paxman

You can find details on the U.S. Clinical Trial here: Paxman Clinical Trial

My wife's oncologist is Cynthia Osbourne and we were treated in Dallas, TX at the Baylor Sammons Cancer Center.  Dr. Osbourne is a big supporter of the cold caps and was great through the entire process!

Here is a link to a local news story here in Dallas (my wife's oncologist is actually in the video - this is NOT my wife in the video): Local Dallas News Story on Cold-Capping 

 

The Process Specifics:

1.  Arrived for Chemo Treatment

2.  Prep - Hair was wetted and combed back, a gel cap was fittted (coolant circulates through this) and a harder top cap placed over that (really all one step).  The machine was turned on (about the size of a small dorm refrigerator).

3. Cooling TIme - You wear the cap for 30 minutes prior to the chemo drip starting, all during the chemo drip and then for 90 minutes after the chemo drip finishes.  There is no cap swapping - once it is on, it is on.  To go to the bathroom, you just unhook the two cooling lines (quick disconnect fittings), go, come back, and reconnect.

The cap was really only uncomfortable for the first couple of minutes it was cooling.  After that, it was mostly the challenge of having to wear it SO LONG.  Taxol treatments in particular were long and she was in the cap for almost 5 hours one day.  That can be even longer if the chemo center is running behind and you have already started the capping.  As an example, one tiime we got the cap on and then realized the pharmacy was backed up in getting the meds ready...add another 30 minutes that day.  An additional annoyance is that the cap came down over her ears a bit so she couldn't always hear so well.  Worse, she didn't wear her glasses (and is pretty near-sighted) so she could not see well the entire time.  Now admittedly, she probably could have worn her glasses but with the tight-fitting cap her earpieces might have hurt her ears or she may have pulled the cap away a tad in them.

Sue at the Baylor center worked with us for every treatment and answered all of our questions.  She was also very receptive to all of our feedback and wonderful to work with!

 

The Success Factors

Even though the "hair" journey is far from over, we believe there are a number of success factors that MAY come into play with regard to how successful cold-capping is for any one person.  Note, we aren't biologists so much of this is just our theories/opinions:

1. Your Specific Chemo Regimen - There are a lot of cocktails out there.  Some seem worse than others.  Neither AC or Taxol are great for hair and the number of treatments and density of the doses all come into play.  My wife began losing her hair about three weeks after her first treatment.  Within a month we knew it would be a "race" as we looked at the sink fulls of hair each day - would she "run out of hair" before we "ran out of treatments"?  No way to know during it, so you just press on.

2.  Your Hair - My wife had really nice, THICK hair.  LOTS and LOTS of THICK hair.  You know, the kind of hair that takes you forever to blow dry.  In short, she STARTED with a lot of hair and as a result has been able to "fake it" with regard to hair loss for a long time through the process.

3. Your Biology - This one is interesting.  My wife did pretty well with regard to side effects (thank You, Lord!) through both AC and Taxol.  We have to wonder if her body's tolerance to the drugs also contributed to resiliency around hair loss.  This is just a theory of course, but, one worth at least considering.

4.  Cap Fit - This one is familiar to all cold-cappers.  You want the caps to fit tight EVERYWHERE on your head.  The problem is these caps are not "custom molded" to everyone's unique head shapes.  They also aren't made of soft foam to conform to your head.  The end result is they will almost all fit tighter in one area than another.  This is true for the Paxman cold-cap as well as (from what I've read) the Penguin cold caps.

5.  Cap Temperature - One of the big pluses about the Paxman setup is that it maintains a constant temperature.  There is no "slowly warming up" and need to swap caps.  It just stays right where it is.  Having said that, it is possible it may not be quite cold enough.  We don't have any real evidence for that of course and certainly we saw the ice crystals in my wife's hair every time we removed the cap, BUT if the cap were even colder, then it might help to compensate for areas where it doesn't fit as tightly to the scalp.

 

Realistic Expectations

So the "dream" with cold-capping is that you will keep all your hair and it will look great like it looks now.  The reality is probably going to be pretty different from that.  Again, there are a LOT of factors in play per above, but our experience was:

1. She lost a LOT of Hair - Her shedding started around mid July and still hasn't stopped.  It has definitely slowed down in recent days, but she also has a lot less.  It is really hard to put a percentage on it, but it has to be in excess of 60%.

2.  She was able to "fake it" a looong time - My wife would creatively style her hair to cover the thinning areas on her crown.   She has never worn a wig throughout all of this, but did finally start to wear hats around September 16th - almost 90 days from her first chemo treatmant and 2 weeks from her last treatment.  She actually went to a wedding on September 12th w/o a hat if that gives you a better picture of how well she was doing up until that point.  She is still wearing the hats today and I suspect she will be for several weeks or even months to come.

3.  Gray and Unstyled - So, imagine you didn't really style or color your hair for three months...now add that it is thinning daily.  That's what you are looking at folks!  We kind of knew that going in, but you do have to prepare yourself for this new reality.  For the last two months she barely combed her hair in order to avoid having it come out.  She also washed it - ridiculously gently - about once a week and no more.  One thing we did notice was that in some spots she had a lot of growth and, of course, that growth came in gray!

4.  Hair "augmentation" - Right now my wife is using this powder called "WOW".  Since the hair on her crown is so thin AND it came in gray, she puts some of it on the gray to make it less obvious.  We will probably try the more sophisticated products like Toppix at some point - TBD.

 

Things that were Awesome

1.  NOT BEING BALD - As noted above, my wife did not go "bald" and the average person would never have suspected she was on chemo for most of her treatment.  Even now since she has hair poking out from under her hat most people would just assume she is trying out a new fashion trend.

2.  Kept her Bangs - My wife really likes her bangs as part of her "look".  For whatever reason, she has kept her bangs and loves this.

3.  Relatively Easy - She tolerated the cold cap well and we did not have to "deal" with carting caps around, renting caps, swapping caps, freezers, etc.  The long days in the caps were the worst part, but still, doable.

 

Our Recommendations to Paxman

1.  Keep Working on Cap Design and Fit - Our cap was actually a second generation cap with little x-shaped straps on it to try and make it fit tighter.  We think there is still opportunity for improvement here.  Indeed, I might recommend a medium density foam insert - between the outer shell and gel - to apply more continuous pressure in the various uneven areas across a person's head.

2.  Explore Making it Colder - This probably isn't nearly as important as #1, but if #1 is harder to do, then colder might help.

3.  Keep up the Good Work - Honestly, this has GOT to be the standard of care in the future.  The machines are reasonably small, the process is doable with only modest intrusion for the nurses, the hassle factor is low and for Pete's sake, WOMEN WANT TO KEEP THEIR HAIR!!!  Breast cancer is hard enough w/o having the tell-tale sign of chemo out there for the world to see every day.  Hair is more than just "hair" for women, but you ladies reading this already know that!

 

Summary

The other day I asked her "would you do the cold-capping again"?  The answer is YES.  We might "adjust our expectations" a bit to match the reality above, but would still do it.  Even now, as noted, in her hats she feels "normal".  She has a penchant for Fedora's oddly enough, so I do joke with her everytime I see something on TV where the characters are wearing them (i.e. Madmen, footage of Vince Lombardi or Tom Landry, the movie Bridge of Spies which we saw last night, etc.).  As noted, most folks never would have guessed and when friends saw her weeks in, most were very surprised at how normal she looked.

 

Pics of the Journey So Far

Before Cancer and Chemo

 

Sorry (goofy one when my wife was trying on new glasses)

 

Chemo Started June 24th, 2015

 

07/05/2015

 

07/21/2015 - Day before third AC treatment

 

07/22/2015 - Heading to third AC treatment

Ice in hair at end of third AC treatment when cold cap was removed

 

07/23/2015 - Every day looks like this almost (hair in sink from slight brushing)

 

08/05/2015 - In chemo, wearing cold cap (last AC treatment)

 

08/05/2015 - End of cold capping for that day (ice in hair, scalp red form cold)

 

08/11/2015 - Hair, Hair, Hair!

08/13/2015

 

09/12/2015 (went to a wedding...last outing before she started wearing hats)

 

09/18/2015

 

10/02/2015 (2 days post chemo)

 

 

 

10/08/2015 (8 days post chemo!)

 

The rest are from today (10/24/2015) - 24 days PFC (Note: the flash makes it worse than it appears in real  life, but I wanted to capture the detail)

PatinMN

Very interesting - thanks for posting. Do you know what the cap temperature is for Paxman? Do all participants in the trial use the same amount of pre and post chemo time in the cap? As I'm sure you know, Penguin recommends 4 hours post chemo, or maybe more for the AC/T chemo. It would be great if Pengun users could cut back on post-chemo capping timebased on the Paxman results.

Free123

Wow, what a precious husband! I am thankful that she did so well during her treatment- she looks amazing!! Thank you for this informative post!

Prayers and blessings to you both~

cabland

PatinM - Per the link below it looks like the Paxman system is at -4 Celsius or 24.8 degrees Fahrenheit

Paxman - the system

Now as to the time in the cap, that's a great question and it makes me wonder since I just found the doc below on their website which actually shows 2 to 2.5 hours post AC and 90 minutes post taxel...hmmm?  However, our infusion times were higher (for AC anyway) than what was lsited here so who knows.  In all honesty, I wouldn't be surpsied if they are making educated guesses on this stuff.

Recommended Cooling TImes

 

Free123 - Thanks, she is a precious wife!

dancetrancer

Great write up!!! I am working on a FAQ for cold cap newbies. May I add a link to your thread in my post? It is a great reference for anyone considering Paxman.

dancetrancer

Also, we have a "success stories" thread I started for newbies as well - would love to have you post a link to your thread on it as well, if you like. Here's the thread:

https://community.breastcancer.org/forum/6/topics/...

cabland

Dancetrancer - just put a link in your sucess stories thread and you are free to incluse this in your FAQ too.  Like I said, we are happy to "give back" in some small way!

dancetrancer

Thank you! I see you posted a link to your thread here - perfect!

Meow13

Thank you for posting and the pictures, I found it very helpful.

cabland

Hello All,

I know it has only been a few days, but even I am a little surprised here. We are exactly 30 days PFC, and yesterday my wife got her port out. A friend came over to drive her to the doctor for the procedure and they decided she (my wife) could "fake it" with some of the WOW powder (from Ulta I think) and she could go without a hat...so she did!

Now she would be the first to say here hair hardly looks "great" by any means, but hey, not bad!

A few pics:

dancetrancer

I certainly think she looks great cabland!!!!!

here2win

Thank you so much for posting this, and with so many pictures. It really helps me set some realistic expectations! Your wife looks beautiful, I lover her smile!

Moderators

Hi cabland,

We can only agree with what all the others were saying, your wife really looks beautiful!

Wildflower2015

cabland,

Your wife looks wonderful rocking that pinned-up style! And I know she enjoyed getting rid of her port as much as the rest of us did! Thanks for posting the write up and photos. Please keep us updated on her progress. You're an awesome, supportive husband and you are both lucky to have each other!

cabland

Just a quick update. These shots were taken on 12/03 after a round of some cheap off-the-shelf hair coloring dye from Sally Beauty supply (note' very mild, but washes out after a couple of weeks...she has already redone it once). The color definitely makes her still very thin hair look less so. She was even able to pull off a tiny pony tail (also very thin of course).

Wildflower2015

Oh, wow, cabland!

She looks absolutely wonderful! very natural color. And the ponytail looks very neat and professional

dancetrancer

Cabland, she looks beautiful and so happy - glowing!

Hopeful82014

Wow - what a thorough write up (thank you!) and how terrific your wife looks at this point (and did, throughout chemo).

I didn't do chemo but have read up a lot on cold capping. I, too, think that the Paxman or Dignicap-type units are the wave of the future. I know Dignicaps are widely used in Europe and Japan and I wish we were that far along, too.

Good luck, Cabland, to both of you. Best wishes for a very joyful Christmas.

cabland

Thanks all for the very nice comments (this is a very different forum than the "car guy" forums I usually frequent!). I forgot to mention that my wife's shedding seemed to stop around the end of November...so roughly 8 weeks PFC. I do THINK the AC was much harder on her hair than Taxol, but who really knows...so many variables as I note in my first post.