Cancer Chemotherapy Headwear & Head Coverings Blog

barbaraThis blog is dedicated to supporting cancer chemotherapy patients dealing with hair loss. We add new content weekly so please subscribe to our feed or bookmark this page.

My name is Barbara Hass and I am a cancer survivor, an advocate for chemotherapy patients and founder of ChemoSavvy.com which offers soft headwear for people dealing with cancer chemo hair loss.  Thanks for visitng and please feel free to comment on my blog, or contact me if you have questions about headwear for chemotherapy hair loss.

Chemo Headwear for Hard Times

When we first started Chemo Savvy, our 'tag line' was "Headwear for Hardtimes". Being a breast cancer and releated treatment survivor, I knew this was the hardest time I had ever been through. After a few years we changed that tag line because it offended a couple of nurses and they refused to put out the catalogs because of it. I never heard any complaints from actual cancer patients, but a couple of nurses thought it was cruel or something. I resisted changing it because I liked it, it was true and there were only 2 complaints after all. But after awhile I thought I was being as petty as I perceived these 2 nurses to be, and while I thought it was arrogant for these nurses to deny patients the opportunity to find some headwear, I realized I was being just as arrogant in my opinion, so I changed it. Today I talked to a woman who was definitely having a hard time. She's a single mom with high stage III breast cancer. About 6 months ago she found out that her young daughter had diabetes which requires insulin injections. So she was still coming to grips with this and she gets slammed with the breast cancer news! Like about online amoxil for sale 98% of the women I talk to that call to order headwear, she was extremely pleasant, upbeat and had a great attitude. She thanked me for having such great headwear, not just "old lady" stuff and she thought the prices were great. She said this was the hardest time she had ever been through (and she had only had 1 chemo treatment, so she is just starting!) and SHE made My day!! It really makes me feel good when I talk to someone like her, and like I said above, 98% of our customers are like that. Unfortunately, that other 2% can make me feel so bad - this is not just a business to me, it's a passion and I have a huge emotional stake in it. I talked with a woman last Friday who was having a terrible reaction to a drug she was getting, and it made her scalp so itchy she couldn't sleep and it hurt to scratch it. She was really miserable and called to order Brian Joseph's Formula 1 shampoo. It was late in the afternoon and the day's shipment had already gone out. I told her it would be shipped Monday, and I could just hear the anguish in her voice, so I told her I could go to the post office Saturday morning and that would get it to her quicker. She got it on Monday and called me on Tuesday to say that she had used it and gotten the first good sleep she'd had in months. I love (most of) my customers!!!
   

Wigs And Hairpieces From Your Own Hair

I am frequently asked if I know where someone can get a wig made of their own hair. I do, but it is very expensive - about $2,000.00 and takes 6 - 8 weeks to make it. Frequently they have to add other hair to yours because there is rarely enough to make a wig. The one place I have found that provides this service is: http://www.worldofwigs.com/custom_wigs.php Alternatively, getting a hairpiece made from your own hair is less expensive, in the $200.00 - $300.00 range. The one place I have found that provides this service is: http://www.hatswithhair.com/Main.aspx
   

Issue with the National Alopecia Areata Foundation Board

Several months ago a woman with alopecia called and ordered a number of hats. She said the National Alopecia Areata Foundation (NAAF) must not know about Chemo Savvy since we weren't listed in their marketplace. She thought we should contact them as we have a lot of very nice headwear options for hair loss. So I found their site, and the marketplace and sent email asking if they would be interested in listing my business along with numerous other businesses for hair loss. They said that would be great and to send them information. So I did, and the woman in charge of NAAF marketplace called and said they would be happy to include Chemo Savvy on their site. She had gone to our web site (www.chemosavvy.com) and said she was impressed with our products. What they ask in return is that the merchant donates a percentage of sales that are a direct result of customers finding the business on their site. It sounded fine to me, and a good way to help support what I thought at the time was a good organization. We put together an ad "blurb", established a promotional code to track orders where the customer found us on the NAAF site so we could donate 10% of that sale and sent all the information on to NAAF. We were just waiting to see our ad show up when I got the following email: "I have spoken with the Executive Director and the Board of Directors at the National Alopecia Areata Foundation. They believe that it is not appropriate to list Chemo Savvy on the NAAF Marketplace. The reason is the potential conflict with the name. As I was reminded we spend a lot of time and energy convincing people that alopecia areata is not related to cancer. Although you have a wonderful catalog and many wonderful products, we do not feel that we can list you as a Marketplace vendor while using the name Chemo Savvy." Apparently my disease (cancer) and the main focus of my business is shameful/bad or at the very least inappropriate, while theirs (alopecia) is not shameful/good or at least appropriate - whatever that means. This was unbelievable to me, and it irritated me for awhile, but I was too busy to dwell on it. Awhile later, someone called me asked me if I knew where they could get a specific item, and I remembered seeing it on the NAAF site. So I went there to find the company and relayed the information to the caller. Then I started looking at the site, and quite a number of advertisers there have cancer and/or chemotherapy predominately on their home pages, and some didn't even mention alopecia at all. One actually said the dreaded word cancer on the NAAF site! Now I was really irritated, so I sent off an email to NAAF. I got a call a couple of days later from the same woman who I had spoke with before and who thought our products could be a real benefit for alopecia suffers. While they still thought the name Chemo Savvy was offensive (that's the word she used!) because it indicates that our products are related to cancer and it's treatment. Since I told them in my email that as a cancer survivor, I was highly insulted by their attitude, they came up with another reason why listing my business was inappropriate. Now they said the name Chemo Savvy was offensive to Indians (I just bet they checked with some Native Americans!). Unbelievable!! There is a Chemo Savvy dragon boat that participates in events to raise money for cancer research, and I haven't heard of any protests about that! NAAF lists a business called "Bald as a Bean", but for some reason they don't find that offensive to bald people. It was an alopecia sufferer who told me about this in the first place, and she wasn't offended in any way shape or form, but the board of directors at the NAAF apparently feel they should censor things for alopecia sufferers for their own good. I am happy to refer people who call me and ask if I know where they could get such-and-such that I don't carry to a number of different business listed in the NAAF marketplace. However, I only give the particular business information, and never refer them to the NAAF site because I am not going to help contribute to an organization run by hypocrytical, egotistical individuals that apparently look down their noses at people who have cancer. SHEESH!!
   

Life Goes On After Cancer and Chemotherapy

In another month I will be a 15 year cancer survivor. It took me about 10 years to finally decide that I wasn't going to die. Every time I would bang into something hard, or fall down skiing and nothing broke, I was relieved - bones that didn't break easily meant I didn't have cancer in my bones. For the most part, I no longer worried about every random pain. About 8 months ago, my sister called to tell me that she had to have a biopsy on her tongue! She had a lump on her tongue and had it biopsied almost a year previously and they said it was nothing. But it still hadn't gone away, and it was painful and hurt to talk. This lump was in the same place she had a really bad mouth sore from the chemo and she thought it might somehow be related. More... She told me that it would be a week until she got the results, and she would only call if it was bad. She was concerned, but not overly so, after all it had been biopsied before. A week later, as I saw her name on the caller ID, I picked up the phone with dread. "It's cancer." is what she said. The been-there-done-that only made it worse, because we both knew what to expect, and it was not good. This particular beast was squamous cell skin cancer - skin cancer - on her tongue. The doctor told her that chemo was a possibility, but that radiation was pretty much a sure thing. Having been radiated on our breasts, we both knew what it does to tissue, and the thought of this on her mouth was overwhelming. She was too freaked out to even go and read about this on the internet, but I had to. It was very depressing. I couldn't bear the thought of her having to go through this. The radiation kills all the taste buds, there is a high probability that your teeth fall out and it can disintegrate the jaw bone. I wanted to jump on a plane and go be with her, but she knew I couldn't be away from my business too long, and said she'd prefer I wait and come when she had to do the radiaiton. This tumor was on the side of her tongue, and when she had surgery, they removed 1/4 of her tongue. Her doc told her you can loose a lot of tongue and still have a completely functioning mouth, so he took a lot and got clean margins. Of course they have to check the lymph nodes, so they dug 25 of them out of her neck. The surgeon did an excellent job of hiding the 6" long incision for that in a natural crease in the neck. There was a miniscule amount of cancer in 1 lymph node, and since they got good, wide clean margins, the docs felt that she didn't have to go through radiation. If it had been any other place on her body, they would have recommended it as a precaution, but because of the devastating effects on the face/mouth, they felt it wasn't warrented. Big relief!! She couldn't talk at all for almost a month, and for awhile she talked with a lisp, but now she talks normally. Chemo wasn't called for either, so she just has to get checked once a month for a long time.
   

Chemotherapy Benefit

In addition to quantifying breast cancer recurrence risk, Oncotype DX also assesses the benefit from chemotherapy.1 While adjuvant chemotherapy is an important part of the care of breast cancer patients, a major challenge in oncology has been to better define the risk/benefit ratio for candidates of adjuvant chemotherapy. By characterizing an individual's risk of recurrence and responsiveness to treatment, Oncotype DX can provide physicians with the information they need to develop a treatment plan tailored to the individual patient. The ability of the Oncotype DX assay to predict the treatment benefit in breast cancer was demonstrated in a study of 651 eligible patients from the tamoxifen alone arm (n = 227) and tamoxifen plus chemotherapy treatment arm (CMF/MF) (n = 424) of NSABP Study B-20. Results showed that the Recurrence Score (RS) is a significant predictor of chemotherapy benefit (p-value for interaction = 0.038) and that not all patients benefit equally from chemotherapy: * Patients with tumors that had low Recurrence Scores (RS < 18) derived minimal, or no benefit from chemotherapy * Patients with tumors that had high Recurrence Scores (RS > 31) had a large absolute benefit from chemotherapy 1The data on chemotherapy benefit is derived from the NSABP Study B-20 which compared hormonal therapy alone versus CMF based chemotherapy and hormonal therapy. NOTE: This article was written up on the Genomic Health site
   

Tykerb® (lapatinib), Approved for Metastatic Breast Cancer

In March the FDA announced that it had approved the drug lapatinib (Tykerb®) for the treatment of advanced or metastatic HER2-positive breast cancer in combination with capecitabine (Xeloda®) for women who had undergone previous treatment with other cancer drugs including an anthracycline, a taxane, and trastuzumab (Herceptin®). The drug is taken orally once a day. More...Tykerb is one of a new class of drugs called "targeted therapies" that focus on particular genetically determined cell traits in an efort to improve cancer treatment by focusing on critical abnormalities in an individual patients' cancer. Tykerb works by disabling the function of an important protein called HER2 along with other proteins dependent on HER2 that drive the growth of cancer cells in about 20% of women with breast cancer. The drug has been called a "significant" breakthrough for women with advanced HER2-positive breast cancer and has proven to have a favorable safety and tolerability profile in the metastic setting. Trastuzumab was the first "targeted therapy" approved for the treatment of HER2-positive breast cancer. The combination of Herceptin with chemotherapy reduces the risk of recurrence 4 years after diagnosis by 50%. However, abbout 15% of women still suffer a recurrence or metastasis within 4 years with Herceptin. Tykerb disables the HER2 protein in a different way than Herceptin, so it is now being looked at as an agent for treatment as an adjuvant therapy in early breast cancer. The National Surgical Adjuvant Breast and Bowl Project (NSABP) is undertaking a new clinical trial, which should be active in the summer of 2007. This trial will compare how well women with HER2-positive breast cancer respond to Tykerb with chemotherapy relative to Herceptin with chemotherapy, as well as how they respon d to Tykerb with Herceptin and chemotherapy. It should be noted that Tykerb does not work for all patients. Several cautions should be noted for women who are treated with this drug. Although, as noted above, the drug is relatively safe, it should not be taken with (or taken only under careful monitoring with) antibiotics, antifungals, certain foods (eg, grapefruit), anticonvulsants, drugs like dexamethasone, and homeopathic treatments such as St. John's wort. In some cases the dose can be reduced to accommodate these other agents. Certain patients with pre-existing heart and liver conditions should be evaluated before treatment. In addition, itching, rash, vomiting, diarrhea, acne, and dry skin have been seen in women who take Tykerb. The use of Tykerb for the tretment of metastatic breast cancer and the drug's emergence in the research arena for use in early breast cancer means that women will have more options for the treatment of some of the more aggressive breast cancers. The appearance of this drug is one more example of the additional therapies based on specific genetic targets in individuals that are being developed and may soon be in general use for many different types of cancers. NOTE: This article was written by Charles E. Geyer, Jr., MD, Director, Medical Affairs, National Surgical Adjuvant Breast and Bowel Project, Pittsburgh, PA
   

My Breast Cancer Journey Continues

My Sister

A year after my breast cancer diagnosis, my older sister was diagnosed with the same type of breast cancer. Fast growing, and aggressive. She had a mammogram shortly after I told her about me, and there was no sign, yet less than a year after that, the tumor had grown so much that the docs couldn't get clean margins. She had a mastectomy. She also had lymph node involvement and was told that if she was given very aggressive treatment, she might live 2 more years if she was lucky.

Fortunately, she went to another doctor who created a very aggressive treatment plan. He also did the infusion method, which sounds to me like a really good way to administer chemo drugs. She was hooked up to vials of the drugs for a three day period every 3 weeks and the drugs were infused slowly, constantly over those days. She took adriamycin, cytoxan, methotrexate, taxol and 5FU - quite the cocktail. Then radiation and tamoxifen.

As of this writing, she is a couple months shy of being a 14 year survivor. YAY! Life

Changing Mammogram

Two years after this, when I went for my annual mammogram I was told there was a new mass in the breast that had cancer before. This mass was deep in the breast, and surgery would be required to find out what it was. I opted to have a bilateral mastectomy regardless of what this turned out to be. My sister (who lived in another state) came for moral support when I had the surgery. Of course she also brought her new boob with her, which was an amazing feat of plastic surgery. It looked and felt just like a real breast. Looking at her and not knowing, you would think something was different, but never would you guess that thing was created from abdominal tissue. It was quite heartening to me with the decision I had made. The mass wasn't cancer, but rather the lumpectomy scar tissue had drastically changed due to a fever I had as the result of an infection that almost killed me the year before. Back when I had cancer, they didn't do the Sentinel Node Technique, but rather took out as many lymph nodes as they could find, resulting in no immune system in the affected arm. The docs caution you about injuries to that arm and tell you to keep an eye on any injury in case of infection. I had cut my finger on a tape dispenser, a very minute cut that produced only a few drops of blood. I watched it, it never got red at all. Three days later I had an unbearable back ache (which I had been prone to well before cancer entered my life) and went to get a pain shot. As I was leaving, I just happened to mention to the doctor that my breast, chest and upper arm were very red. I thought from the stress of the back pain. The doc took one look and checked me into the hospital. I was asked if I had a living will. I said yes, why? They wanted to have someone bring it to the hospital.

What? Why??

They said the infection was very close to my heart and very serious. Apparently a nasty old bacteria got in that little cut, traveled up my arm to where the tissue was weakened from radiation, and settled in. I was in the hospital for 4 days being pumped full of antibiotics. Very scary! Cancer would take at least months to kill me, and this little germ could have done it in hours. Freedom The bilateral mastectomy wasn't too bad, and I lost 8 pounds in one fell swoop!. After being a double D cup, having no breasts was rather freeing. No more bras, no more dents in my shoulders from straps, no more upper back aches from the weight. I didn't get any prostheses, but after about 3 years, the novelty wore off and I got tired of being flat chested. I opted for tram flaps rather than implants, not that implants were a viable option for me since radiated skin tends to break more readily than it expands. I couldn't have 2 tram flaps because I had a gall bladder scar that prevented getting the muscle on that side up to my chest for the blood supply. So, I had 1 tram flap and 1 free flap. With a free flap, the tissue is completely removed from the muscle, and blood supply is obtained from a vein in the back that's brought around to the front. It requires a lot of micro sewing to get it working. There was only 1 doctor in town that could do a free flap, so I had 2 surgeons, 1 for each side. The surgery went quicker than expected, so instead of an 8 hour surgery, it was only 6.

Recovery

The hospital stay for this was completely unpleasant for a number of reasons, one of which was all the tubes and monitors I was hooked up to. The free flap had to have it's own monitor attached because of the possiblity of the tissue dying, and then they'd have to get that off my body pretty quickly. The pain from this type of surgery is really bad - so bad in fact that pain drugs don't have much effect. My sister has an extremely high pain tolerance, and she told me it was the worst pain imaginable (the thought of this pain also contributed to me waiting so long to do the surgery). Fortunately, not long before I had the surgery, the docs realized (duh) that if they put in an epidural high up in the spine, they could keep the patient completely numb from the chest down. I had no feeling below my collarbone, and hence couldn't walk - not that I'd be able to with all the tubes anyway - so I was in intensive care for 3 days. Except for the fact that you don't get any sleep in intensive care, it wasn't bad at all - no pain whatsoever. After 3 days, the pain gets down to a level that can be controlled by medication and I was moved to floor where I could actually sleep. That is to say I could have slept if the person in the bed next to me didn't have some strange and noisy issues and the nurse wasn't such a {bad word}. I was pretty cranky from lack of sleep, and at 2:30 in the morning I called my husband and told him he had to come get me. He tried to reason with me about this, but I kept telling him "if you love me you'll come get me". Twenty minutes later I hear him telling the nurse that he doesn't know what's going on, but it better be fixed fast. My husband is 6'4" and rather intimidating, and he had the staff scrambling. The woman next to me - and her male interpreter who was sleeping in a chair - were moved to another room, a competent nurse was assigned to me, a sleeping drug was obtained and my wonderful husband slipped out sometime after I fell asleep. My new chest lumps are not great - without clothes on, there is no question that these aren't breasts. However, they do make my clothes stick out in the places they're supposed to, they don't sag like my old breasts did and I still don't have to wear a bra. It would be nicer if they were better, but they are perfectly good clothes bumps.

   

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