A Message From Liz
I will need a bone marrow transplant as soon as I go into remission. Human leukocyte antigen, or HLA, typing is used to match patients and donors for bone marrow transplants. These proteins — or markers — are found on most cells in the body. A person’s immune system uses them to recognize which cells belong in the body. You have to have a match of four combinations of markers, otherwise the patient’s immune cells may attack the donor’s cells or vice versa post-transplant. Because HLA types are inherited, patients are most likely to match someone of their own race or ethnicity. I am lucky, because I am of Northern European descent, and most of the donors in the National Marrow Donor Program are of similar ethnic origin (mixed race donors only make up 3% of the registry).
So, if anyone is interested, anyone can sign up to be a bone marrow donor in the National Marrow Donor Registry. You may be a match for me, or for someone else in need of a life-saving transplant. Here’s how it works — it’s sort of like E-Harmony – you can Be the Match!!
Go to www.marrow.org to sign up to be in the Be The Match Registry (formerly known as the National Marrow Donor Program Registry, same database). It’s three steps:
- Online application to confirm you meet basic registry guidelines (such as, you do NOT have leukemia, etc.) – this part involves checking six boxes (30 seconds).
- Complete the online form and order your registration kit; if you choose to do so, you can also make a donation (probably tax-deductible) of about $100 that will cover the costs of the kit, the searching, the testing, etc., but if you don’t want to donate, I think the Registry will cover the costs.
- Follow the instructions in your kit to collect a swab of cheek cells and return the kit.
Once you are in the database, you are basically committing to:
o Be listed on the registry until your 61st birthday, unless you ask to be removed
o Consider donating to any searching patient who matches you
o Keep the registry updated if your address changes, you have significant health changes or you change your mind about being a donor
o Respond quickly if you are contacted as a potential match for a patient
You have the right to change your mind about being a donor at any time. Donating is always voluntary.
If you are ever called saying “You are the ONE” to save a life – just like in the Matrix! – you have a choice to decide whether you want to give any blood or marrow, you don’t have to donate just because you are contacted. The donation procedure is painless, and, depending on the patient who needs the transplant, could involve a peripheral blood donation, much like donating blood to the Red Cross where you just sit in a chair and they take some of your blood. If not a peripheral blood donation, the procedure is done under anesthesia, and you might feel a little soreness where the marrow was collected after the procedure is done for a few days or less. When I had by own bone marrow extracted, after the procedure, I just felt a tiny little sore area of about a half-inch diameter which went away in about a day, and I frankly hardly even noticed it. If contacted, the Registry will give you all the details about where to go, what to do, etc. The Registry program covers all costs associated with the donation, the only costs to the donor may be that you have to take a few hours off work to actually do the donation.
Chemo/Radiation Therapy and the Skin
I am in the process of checking out several lines that have products that deal specifically with cancer patients skin issues. This information was taken from the PCA SKIN website. For more information check out their site at www.pcaskin.com
PCA SKIN® is an ideal choice for soothing and supporting the skin of those undergoing treatment for cancer. We offer many advanced daily care products that provide gentle, non-irritating cleansing; soothing; and strengthening benefits for stressed skin. Some specific product recommendations are creamy cleanser, anti-redness serum, hydrating serum, brightening therapy with TrueTone, perfecting face & body hydrator SPF 30, après peel® soothing balm, ReBalance, silkcoat® balm and peptide lip therapy.
common dermatological side effects of cancer treatment
• sensitivity or allergic reactions
• severe dryness
• flushing
• hyperpigmentation
• photosensitivity
• rashes
• acne/folliculitis
Through good skin care, we can help these patients look and feel better. It is wise to select skin care products that do not contain synthetic fragrances, colors or other known sensitizers to avoid instigating any reactions. Peels should be avoided during the course of chemotherapy, except detox gel for acne breakouts/folliculitis. Cancer patients should consult their oncologist prior to beginning any new regimens.
rehabilitating the skin after completion of treatment
Using gentle products during treatment can help keep hyperpigmentation at bay, but when the skin recovers, blended superficial chemical peels can help to rid the skin of any unwanted pigmentary deposits. Protocols should focus on the low-dose approach to allow the skin to adjust and regain equilibrium. Our highly educated team of Physician Consultants is also available to help you customize regimens and treatments for them.
Christmas Eve Cancer News
The holidays and my adding a second location in downtown Charleston has kept me very busy for the past few weeks. My husband and I decided to take some R&R (that means adults only) to Disney and Epcot for the holidays. On Christmas Eve I received some very sad and disturbing news about a client who has become a long distance dear friend since we first met several years ago when I did a facial for her at the Woodlands Resort. Since then I have been her “go-to” person for skin care advise and she has purchased whatever I’ve recommended over the years, even though she lives in Washington, D.C.
Her step mother called me to say that Liz had been diagnosed with Acute Lymphoplastic Leukemia (ALL) a few days earlier and was in the hospital for chemotherapy. The only thing she asked of her stepmother was for her to call me for lip and skin advise. She is, evidently, already experiencing some of the chemo side effects which can be very drying especially to the lip area. I plan to call her tomorrow and find out how I can help and send her what she needs.
I am hearstsick at the thought of this bubbly young mother of a two year old and and 8 month old spending the holidays in the hospital and that she will have to remain there for at least a month for chemo and then on an outpatient basis for daily treatments. Her story is similar to Mandy’s (in an early story) who I met in Phoenix and was also a lawyer and young mom who too was suddenly stricken with extreme tiredness and dignosed with a form of leukemia. She is in remission now, I am happy to report.
Please pray for Liz and her family as they face this difficult time in their lives. On a happier note, her church family has started a website called www.lotsahelpinghands.com/c/620823 . Apparently, this site enables friends and family to coordinate help with childcare, meals and whatever else is needed, which I think is more than wonderful.
Check this site out at www.lotsahelpinghands.com and you too can establish this kind assistance, if you need it.
The Looking Glass
The Looking Glass is a boutique on the lower level of Hollings Cancer Center currently specializing in prosthesis and wigs. It was previously owned and run by MUSC but has just recently been sublet to Paul Falkowski, who is an oncology certified massage therapist. I had the pleasure of speaking to him the other day and he shared his vision for his newly acquired space. He plans on incorporating massage and possibly skin care to serve the needs of cancer patients and their care givers. Many cancer facilities throughout the country are adding “spa like” areas to give the patients a place to go and be pampered. Our vision is the same and I’m so excited about what he is doing. I’m not sure his space is large enough for a facial room but I am opening up a space right down the street in the French Quarter. I plan to meet with him soon and discuss how we can work together to serve this very deserving population. He plans to open in January and I will keep you posted and provide the website and phone number when I get it.
LGFB at Hollings today
It was great to see the lovely group of ladies that came to Hollings Cancer Center today for Look Good Feel Better. It was so nice to finally meet Patricia Warner, who so kindly posed for the article in Azalea Magazine this month. We had a great time and I think everyone Did feel better when they left. I alway feel so good when I know that I have helped to give a little joy to those who are suffering so much with cancer and it’s treatment side effects.
Once again this month, I was without an assistant to help with the training. I don’t know what’s happened to all of our volunteers but I do know that there is a training for new volunteers coming up in February. I’m encouraging every cosmotologist and esthetician I know to step up to the plate and give just a little of their time for this wonderful program. A brand new esthetician from Miller Mott Technical School that I’d met recently did stop by to check it out and I’m so happy she did. It’s nice to see those new to the field trying to do their part in the community.
AZALEA – PREMIER ISSUE
I am so happy to announce the debut of AZALEA a Summerville Magazine that is now available. What makes me especially happy is the article I told you about in my previous posts about my work with cancer patients. A beautiful woman, Patricia Warner Kurent, was kind enough to be photographed for this article. She was diagnosed in May 2009 with Stage I Lobular Breast Cancer and has just completed her treatments. The article is called “Hope is a Beautiful Thing” and is written by Celeste Massey (page 52).
New Cancer Center in Charleston
We are lucky to have yet another cancer center in our area. Roper St. Francis in West Ashley has a new $19 million dollar, 76,000 sq. ft. cancer center expected to open in the fall of 2010.
Patients will be able to undergo cancer treatments such as chemotherapy and radiation, as well as, diagnostic and lab tests. The building will also have a patient resource library and retail shop that will sells wigs, prosthesis and specially designed garments. A large portion of the building will be the home of Charleston Hematology Oncology Associates. Go Charleston!
Your “Touching” Cancer Story
I would really like to hear your stories. Whether you’re a cancer survivor, care giver, family or friend you have a beautiful and “touching” story to tell. Please share…
“Touching” Cancer Story – Judy
I really want to get the stories of our patient volunteers out so you can understand my passion for my volunteer work and my oncology esthetics work with cancer patients. Each story is unique and sad in its own way
Judy, another volunteer patient at our Phoenix class, was diagnosed with Stage 3 breast cancer in 2003. Although a lump was only found in her left breast she decided to have a double mastectomy. And lucky she did, because during the surgery cancer was found in the right breast too. She had chemo and then for another 3 months daily 45 minute sessions of radiation, which left her emotionally drained and tired. The skin on the radiation site was dry and sore and to this day she has a red patch on her back which is the site of the radiation exit area.
Three years later she was diagnosed with a heart condition from aorta and ventricle damage (not sure it is related to cancer treatment though). She recently had a PET scan which showed cancer now in her bladder…and so she begins again with rounds of treatment.
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I have had some requests to subscribe to my blog so here is how to do it:
RSS, which stands for “Real Simple Syndication”, is built in to the blog. On the sidebar, you’ll see the Entries RSS and comments RSS links. With those links, you’ll be able to subscribe to my blog feeds. You can simply click on the link and the last few entries in my blog would be added to your newsreader. For instance, if you have a My Yahoo or iGoogle homepage, it would be added on your homepage as a block of content. If you’d prefer to have it sent to you via email, please let me know. Thanks so much for your interest. My contact email is caralinda@bellsouth.net
