Preventing hair loss during chemotherapy with Penguin Cold Caps

Update 2013

Well, it has been a long while since I have updated my blog. Life has been one crazy hectic journey and I can't believe it has been almost 2 years since I finished chemo. The double mastectomy went as well as can be expected.  I had reconstruction and now have very perky LA boobs! I had a great plastic surgeon, (Tiffany Grunwald) and Dr Giulliano was my breast surgeon. I also had 6 weeks of radiation which delayed the finishing of the reconstruction, but today it's all done!
Some other big changes in my life - I became an advocate for cold cap therapy, as I was frustrated that most women were not told about this option by their doctors.  Then in February 2012, I was invited to become an official representative for Penguin Cold Caps™. It was good timing; I was a single mom with young kids and I needed a job, I also needed to find a way to balance work with being around for my kids. Penguin seemed like the perfect match for me, to promote something I was passionate about, whilst helping other newly diagnosed women navigate this journey that I had already completed. It has been very rewarding and my clients have helped me through my journey as much as I have helped them. Helping other people was and is the best medicine to heal my pain from the grief of the end of my marriage, and having breast cancer.

A big part of my job is to try and educate oncologists about cold cap therapy, as most of them didn't believe it worked. Now I have about 20 oncologists in the LA area who regularly refer patients to me, and I have helped over 100 women save their hair. It is no coincidence however, that virtually all the doctors who recommend PCCs to their patients are female. It seems that male oncologists just don't get how devastating hair loss is for most women. They are dismissive to their patients who ask about it. But hopefully this will change over time, as the word spreads.

I want to share this link with you: I recently appeared on the CBS TV show 'The Doctors" which just aired on May 2nd 2013. Unfortunately it did not air in the Los Angeles area so if you live in LA please "share" on your Facebook pages!

http://youtu.be/6935hpVeeDY

Surgery Day

Hi everyone!
Well today is D-day......or should I say B-day, as I'm going to have a double mastectomy today. I have decided to do both sides after much deliberation and vacillation back and forth on this decision. I leave to go to Cedars Sinai today, and I am scheduled for 1pm. Feeling good about my support system, and my Doctors. Dr Giulliano is my breast surgeon and Dr Tiffany Grunwald my plastic surgeon, who will do my reconstruction at the same time. It has been a painful decision, but after some time has passed (and two lovely vacations!) it feels clear to me now that this is the right decision. I had a friend take some fun pictures of my boobs last night, so I feel like I can say good bye to them properly now. They have served me well, been admired by many ; ) and nutritionally nurtured both my beautiful children. So goodbye breasts, hello Dolly Parton!
I will update soon on my post op recovery!
love Tricia

Introduction/How I found out I had breast cancer

Hi everyone,
Since I now have a few followers I felt I should back up and start my story from the beginning and explain how I discovered I had breast cancer. When I put together this blog I used the old newsletters I had been emailing to my friends and family updating them on my progress. They already knew the background but all you new followers don't.......
So I had been to my OBGYN in October 2010 to get my annual breast exam and pap smear. He examined my breasts and gave me the all clear. I was 40 years old at this time. Then on Jan 26th of this year (2011) I was laying in the bath and for once was not in any kind of a rush, so I decided to do a breast exam. That decision saved my life. As I did the breast check I felt on my left breast towards the bottom edge what appeared to be an extra rib bone....except the rib seemed unusually high as if my rib was poking through where the bottom of my breast should be. I then felt the other breast to compare and realized there was no such "rib" on the other side, and what I was feeling was in fact a large lump, not a rib at all. The lump was so big that I was not that concerned that it could be cancer as I didn't believe a cancerous lump could grow out of nowhere. I presumed it was either a cyst or fibroid as most of the time when you find a lump it's benign. I got on the phone immediately and called my obgyn doctor to get a referral for a mammogram. I didn't even bother seeing him first as I know that when they find a lump they will always have to do a mammogram no matter what, to be on the safe side and I didn't want to waste any time. I called and got an appointment for a diagnostic mammogram the very next day. A diagnostic mammogram is for people who have already found a lump, rather than a routine screening, and it means that the radiologist is present and able to read the results on the spot. I went to the Women's Breast Center in Santa Monica and was examined by Dr Reznick. He did an ultrasound first and told me he would need to do a biopsy. He said he knew it definitely wasn't a fibroid, and if it was a cyst it was 50/50. When I asked what he meant by that he used the C word for the first time I felt very scared when he said that. I had the mammogram next and then the core needle biopsy. He gave me a local, and the biopsy was a little painful, but not as bad as I expected. After that I went to get changed and during that time he and my husband looked at the mammogram film, which confirmed I had breast cancer. My husband told me once we got down to the car. I was filled with a sense of deep shock and disbelief as this didn't seem like the sort of thing that should happen to me. Over time this subsided and we began the journey of researching my treatment options and starting the long process of more diagnostic tests and hospital appointments. For what it's worth my advice to anyone going through all this is do not treat your Doctors like Gods! Research the treatments for any drugs they recommend, ask questions about the efficacy of the treatments they recommend, blunt questions like "how much does this treatment increase long term survival, versus other treatments" Don't take for granted that their treatment is the only options. For me using Western Medicine was urgently required due to the aggressiveness of being HER-2 Positive, and I feel comfortable with that decision. I am so deeply grateful to my friends and family for all their support during my chemo. My local community who brought me so many meals, some of them people I had never met before......thank you to all of you, your love support and kindness has meant so much to me!
love Tricia

Rapunzel Hair and Makeup Look

Hi Everyone,
It's been a few months since my last update, but today I am having my 6th and final chemo, hooray! As I write this I am being infused with the chemo drugs while wearing the Penguin Cold Caps. And yes, I still have all my hair! Not even any thinning! I have lost a lot of my body hair, including my eyebrows, although my eyelashes are intact, touch wood they will survive this last round.
On Friday of last week I had a follow up MRI to see if the tumor is still present. I got the best news possible......No Evidence of Disease. So the drugs and chemo have totally iradicated the cancer!
Then yesterday I went to see my breast surgeon Dr Giulliano to discuss my surgical options. At first he was very optimistic about being able to save my breast since the cancer has all gone and he recommended a lumpectomy. But after doing a mammogram it showed a large amount of calcification throughout the entire breast. Although this isn't a problem for my health, he has to remove it all because it looks exactly the same as DCIS (early breast cancer) and they will not be able to screen me in the future if the calcification remains. I was a little shocked at first when he told me the news, but in one way it's a relief that the decision is no longer mine to make, as it is an incredibly difficult decision to choose to lose a breast versus lumpectomy. Now it appears that I don't have the luxury of the choice which in itself is liberating!
Please consider signing up to follow me on this blog, as the more followers I have the more I will be able to promote awareness about the Penguin Cold Cap therapy, and help other women save their hair! By becoming a follower you will receive an email each time I post an update as well!
Thanks so much,
love Tricia

July 7, 2011 1:46 PM

Updates from March to July 6 2011

Feb 1^st 2011

Hi everyone,
I got some results yesterday and it shows a cancerous tumor of intermediate aggression level, but the ultrasound suggests it may be localized. The radiologist said he thought the tumor was small, but we don't have those reports yet so till we get those we won't know much more. No Vascular space involvement is identified, not quite sure what that means but I'm told it's a good thing. There's still a lot of tests to do and I am meeting with a Breast Surgeon next Monday Feb 7th, who is world renowned in his reputation. But of course as with all the best Dr's he does not take my insurance!

Sorry to do a mass email like this, but it's the only way I can keep everyone informed without spending my entire life on the phone.
Thank you so much for all your love and support,
love Tricia

Feb 7^th 2011

So we met with the surgeon today and got the MRI results. The area of DCIS (very early cancer) is a lot larger than we had thought. 5.6cm in depth and the length was about 3-4cms. Although DCIS is much better than an invasive tumor (I have that too but it's only about 1cm) it is still treated medically the same way as cancer, as if left untreated will become invasive cancer. Because this takes up a large portion of my lower breast, he thinks he may not be able to save my breast. He thinks I probably will need a mastectomy. He also said that if I had a lumpectomy I would need reconstructive plastic surgery, and the re-occurrence of the cancer returning is higher.

I am having a more tests this week, bone scan, PET CT, consulting with plastic surgeon and checking to see if I have the breast cancer gene. I have been asked to stay away from small children after the PET scan for 24 hrs because I will be radioactive (ie no hugging and holding them) so I think I may need a place to stay on Thursday as there's no way my kiddies will go for that! Any offers of alternative accommodation! I promise no hugs or kisses for your children!

Meeting the surgeon again next Monday to discuss all the results and I expect he will schedule a date for surgery then. It will be major surgery, and then a second surgery for completing the breast reconstruction. I was very touched by how sensitive the surgeon was, and how caring and warm he and all his staff at St John's were, right down to the hilarious venopuncturist! When the surgeon walked into the room we could both feel his compassion and regret about the possibility of losing my breast. I am still trying to deal with this, and not get too fearful about the other tests. If the worst thing is I lose a breast and get new perky L.A. breasts instead, and that saves my life then I will be grateful.

Thanks to all of you who have offered so much support,
love Tricia xx

Feb 14^th 2011

Hi Everyone,
Happy Valentine to all of you! I had such a lovely evening with George. He has been such a rock to me, so supportive and loving, and he has spent every spare second researching the latest studies on breast cancer treatments that both western and alternative medicine have to offer. I have not had to deal with the burden of this, and I am so grateful to have his knowledge, expertise and dedication in doing this for me, although of course it will ultimately be my decision as to what treatment options we go with.

What we know about the tumor is that it is what they call a Triple Positive meaning it is estrogen and progesterone positive as well as HER-2 positive (which is a more aggressive form of cancer but also responds well to recent treatment advances). Tomorrow we are consulting with an Oncologist running a clinical trial at UCLA which is showing extremely promising results in my kind of cancer. My breast surgeon is recommending me for this study so we will see what they have to say and if we feel that is the safest option for me. It sounds like they are going to recommend chemo though, no matter what options I go with, but in this case chemo responds better to HER-2 cancer than it does to other breast cancers, so this is something for us to consider.

The bone scan and PET/CT scans came back clear which was really good news.

More news to follow, and thank you again for your prayers and good wishes. Also thanks to my dear friend Carmela who has taken care of my kids so many times over the past few weeks at short notice.
lots of love Tricia xxx

Feb 28^th 2011

Hi friends and family,
Finally it looks like we have a treatment plan in place. I got accepted for the study, and I got into the study group I wanted to be in where I get an extra drug that has been having great results with my kind of cancer, and has been previously only used for advanced breast cancer. I have chosen to have chemo/drugs before surgery on the advice of my doctors and the one advantage of this is we can see if the tumor is shrinking and how well it's responding to the treatments. At the end I will still have surgery but if the drugs work I might not need a mastectomy. So fingers crossed that the drugs/chemo work. I am very thankful to George for all the time he has spent researching like crazy, wading through all the studies, research and general bullshit which saved me having to do it, would have been very stressful to do it alone.

We are doing OK as a family. When I initially told Eliza that I was having a surgery and they were going to take off my boob and make me a new one she laughed and said "you're joking right?" when I promised her I wasn't joking and explained about my boob being diseased, she said "but Mummy, only God can make boobs!" After picking myself up of the floor, I replied "well God also makes very clever people called plastic surgeons who can also make new boobs".

Then when I broached the subject of losing my hair I asked her "Eliza how do you think I would look with short hair?" she replied "I think you would look babyish, ugly and stupid!". Straight from the mouth of babes! She is actually quite upset about me losing my hair, and got a little tearful about it. But when I told her she could come wig shopping with me and try lots of wigs on she cheered up, bless her.

Talking of wigs, while at the hospital the other day (my new second home) I took a peek at some of the wigs they sell in oncology. These wigs were synthetic hair, nice but not as nice as real wigs. They start at around $150 upwards, and the real hair wigs range from $600 - $1,000. I asked the lady if my health insurance would pay for my wig. "Certainly, she replied, let me check how much your insurance will cover". A few minutes later after calling my insurance she said "They cover $35" After we had both finished laughing about that (where the fuck do they come up with that number???) I had a brain wave. As I remember when I was Halloween shopping with Eliza, her Snow White wig cost around $30, as do most of the Disney wigs, so I guess I'm going to have to be Snow White or Ariel for the next six months.

So tomorrow I am having a surgery to get the lymph node biopsy, a breast biopsy and a port attached. About a 45 minute procedure, but I will be put under. Thanks to my friends Carmela, Kirstin, Andie and Cathy for handling the kids, and taking me to and from the hospital. Then Wednesday I start my drug treatment. Then 3 weeks later the chemo starts. I will update again soon.
love Tricia

March 7^th 2011

Hi everyone,

Last Tuesday I had the surgery to have the port put in for the chemo, saves me having to be stuck by lots of needles and trying to find a good vein each time. I also had the sentinel lymph node biopsy done.

The experience of surgery in this hospital was quite surreal. I was taken to the pre-op room which, as is always the case, was absolutely freezing. They had me get undressed and put on the hospital gown. With the gown was a warm fluffy pair of socks. As I put the gown on I noticed that it had these strange pouches built inside it. On the wall next to my bed was some kind of hair dryer like contraption with a long hose on the end of it. Then the nurse came over and attached the hose to a hole in my gown, and lo and behold my gown's "pouches" were suddenly filled with hot air! I blew up like Michelin man, and man it felt sooooo good. There was even a remote to control the temperature!

I was left alone then for a few hours, so I spent the time on my computer surfing the web (free wireless) and chatting on the phone. Eventually the nurse came in to give me my needle in the hand to start the drip. Now any of you who have had surgery before knows how much this needle in the back of the hand hurts. I have particularly challenging veins, so it usually takes several attempts to get the vein (that's why I opted for the port for chemo) which becomes pretty painful for me. This time though, they actually gave me a local first, tiny pin prick and from then on I couldn't feel any of the many attempts she had to make to get that vein hooked up. Wow, why don't they always do it this way? The nurses were so lovely that I really didn't feel anxious when they wheeled me into the O.R. I was introduced to my surgical team, and they hooked my mitchelin man gown up to their own hot air dryer so feeling really comfortable and warm at this point. Then the nurse said "we are going to start your calf massage machine now" I really thought she must be joking, but sure enough this machine started massaging my calf muscles alternating between the two legs. I remember saying "all we need now is the handsome masseur to come in" right as the surgeon Dr Giulliano came into the room. They started me on the happy drug and that is the last thing I remember. Really this felt like a true spa experience right up to the moment they cut me. Good on you St John's Health Center, never want to have surgery anywhere else again.

So today I got the results of the lymph node biopsy, a real biggie in determining if the cancer has spread to the lymph nodes and therefore might have metastasised. The results were "isolated tumor cells" in one node (they removed 3) which is a good result as it means that it doesn't qualify as metastasis and doesn't change the staging of my cancer, which is still stage 2.

The other piece of good news is that I may be able to avoid losing my hair. Mum and Pete (my brother) told me about this thing called cold cap therapy. First I was sceptical but I started researching it online, and came across this news clip from Good Morning America and ABC7. Check it out:
http://abcnews.go.com/Health/OnCallPlus/cold-cap-therapy-women-chemotherapy-hair/story?id=11985624
I have been researching this for a few days now and have spoken to many women who used the cold caps and still have all their hair. In fact the lady in the news story has the same kind of cancer as me, same chemo regimen and a year later still has all her hair. So now I am working on getting my oncology hospital to accept the donation of a free freezer to store the caps in. Dealing with a lot of bureaucracy right now, but then they don't know who they're dealing with and how I will wear them down with my persistence and tenacity!

That's all my news for now,
thank you again to all the friends who have taken care of my kids for me after school and for all your emails, it means so much to me to hear your words of support and love. Keep the prayers coming, and would you please include in your prayers my friend Holly who just got diagnosed as well.
love Tricia xx

March 25^th 2011

Hi Everyone,

Well, it will probably come as no surprise to those of you who know me well, that I beat the hospital into submission over the freezer for storing the cold caps. I think by the end of my deadline week they were literally saying "OK OK we'll take the freezer just please stop calling and harassing us!" So this big chest freezer is now installed in the chemo room, and sadly I am the only person using it. They are all very curious and sceptical about whether the cold caps will save my hair or not, but I think that once I show up for round 2 with my full head of hair (hair falls out between day 14-21 of first round) which will be 21 days after the first round they will know it really works and start telling people about it.

Very few people have used cold caps in the USA, I think literally a 100 or so, but word is spreading and the cold caps companies are trying to get FDA approval. Unfortunately because it doesn't involve making money for drug companies, things don't get pushed through for approval so quickly, since the drug companies fund the FDA organization. Also, sadly I feel that because this whole profession - the FDA and Oncology - is heavily male dominated, they just don't get the trauma of what it means to lose your hair, especially for women who have long hair. Truly if I had short hair I wouldn't bother with the caps at all, as it is quite a tortuous process!

So I have good news about my cancer. After just 2 weeks of taking my drugs Herceptrin and Tykerb the tumor literally disappeared. This is before any chemo. I had noticed it seemed to be shrinking in the first week, but I don't like poking around the lump too much, but George felt sure it was shrinking. Then at about 12 days from starting the drugs I had a good feel and it was just the size of a pea! Bear in mind that the lump I could feel was about 21/2 inches originally. Then 2 days later I felt again, and I could feel literally nothing! I went back to the breast surgeon to have my final biopsy for the study and he was thrilled and delighted and said it was basically all gone. He managed to find a tiny fragment of cancer tissue for the biopsy, but even that was a challenge for him.

This biopsy was so much less painful than the first one I had (not done by him - but then he is a world renowned in his field). At the end of it I told him "Dr Guilliano, when you grow up you should be a surgeon" We had a really good laugh about that, and then he got teased by the team of Nurses in the room because I asked him to help me do up my bra over my bandages and he kept fumbling around. Apparently doing up bras not his forte.

I had my first round of chemo on Wed 23rd. The cold caps are quite an ordeal, as they have to be changed every 30 minutes and the temp of the caps is -33 degrees celsius. It didn't feel as bad as I thought it would, I think the hardest part is that I couldn't just rest and sleep (the meds made me very drowsy) because of the cap changeovers. But if it saves my hair then it's totally worth the hassles. Poor George though, it's hard work for him and the caps have to be worn for 7-8 hours. I must say though I am quite excited about the prospect of losing the hair on my body, (as is George!)

Now it's day 2 since my chemo and I really feel OK so far. I was expecting to feel some symptoms day 2 but so far it's dinner time and other than a slight sore throat and tiredness, I feel good. I have been resting though, just to be cautious, but I felt well enough to drive and pick up my kids from school. I'm sure by the evening I will start to feel a little weary, but then again that often happens without chemo, 2 young kids will do that to you! LOL

I have been so touched and humbled by the kindness from my local community in Malibu. Someone I don't even know from a mommy and me group I go to set up a website called mealbaby.com It invites all the friends in my community to drop off meals for my family. The website's calender allows them to pick the date so there's no overlapping, and it even tells me what each person is cooking for us! It's set up to cover the first few days of each chemo session. Eliza is particularly happy and excited to see what dinner has arrived on our doorstep and she has been trying some new foods and expanding her "sophisticated palate". For out of town friends, it allows them to purchase online gift cards to local restaurants. So a really big thank you to everyone who has been bringing us such delicious meals and for the friends who bought gift cards. I cannot tell you what a relief it is not to think about what I'm cooking for dinner for these next few days.

That's all our news for now, and again I want to thank you all for all your individual messages. Even if I don't have time to respond to everyone it gives me a great lift to know you are rooting for me!

love Tricia