Wishing everyone a Happy Christmas and New Year

imageWishing everyone A Happy Christmas and a Happy and Safe Holiday season.. To all who read and follow my blog, from more than 126 countries around the world, I thank you for the support you have given me. May 2014 be a special year a time to make dreams come true, a time to find peace however difficult the circumstances and a time to spend with family and friends… Take care all…. from Helen xx

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Part 3 Breast cancer, Lymphedema and Lymph node transfer by Lisa Jenni

imageONE EXCEPTION…. By Lisa Jenni

If I have to point out one single item of the long list of treatments and garments, the thickly padded JOVI-Sleeve has turned out to be my lifesaver!

Every night, up to the night before LNT surgery, I was wearing this sleeve to return most of the fluids accumulated during the day. It kept my arm soft, but it still couldn’t stop some fibrosis on the lower outside of my left elbow and the back of my hand, and the climbing overall accumulation of fluids. My PT shrugged her, called it matching “Popeye”-arm and said: “that’s the way it is, you got to deal with it” On a personal level, this has been one red thread through the years, resignation and fake empathy on the caregiver’s side.

I cannot overstate how ecstatic I became when I found the video conference/symposium from Lymphatic Research Foundation in June 2013, where Dr. Chang was one of the featured doctors. I watched the video links over and over and was immediately convinced this is my Tour du Liberté from Lymphedema! My oncologist at once contacted the hospital in Houston, but only got the devastating return that Dr. Chang wouldn’t take new patients…
…never say never, – a few weeks later in August, I got an excited call from my Dr.’s office saying I must call for an appointment with Dr. Chang at the University of Chicago Hospital, where he relocated recently.

October 21, 2013:
I was seeing Dr. Chang in his offices at UC Hospital. I was so pleasantly surprised what a friendly, warm and approachable person he is, quite funny and zero bad celebrity manners at all. He asked me about my history, examined my lymphedema arm and confirmed quickly that I am a good candidate, however not for the bypass surgery. My skin thickening (fibrosis) on my hand and lower arm has progressed too much. He classified my lymphedema as Stage 3 and recommended a full reconstructive lymph node transfer, which would ensure the best outcome. We agreed to send out for the insurance acceptance.

4 weeks later the insurance agreed to pay (minus my deductibles). The surgery was scheduled for Friday, Dec. 13, 5:30am, thinking – WOW, that’s early! Maybe it’s a good thing being first… After I had the fixed date, I arranged flights and hotel rooms for my husband and me. We had to travel at different times and days, so I was hacking away on my laptop like a travel agency.
Fortunately, my husband and I signed up for an additional employer-sponsored and tax-free healthcare account, which we’re going to tap in to pay the deductible and hopefully some of the travel expenses related to the prep and surgery. At least, my husbands’ flight came out of our airline award points. You gotta use what you can find!

December 10, 2013:
I flew from a freezer-cold Seattle into a even more freezing cold Chicago, where I had booked a hotel down town, so I could visit the Christkindlmarket on my day before surgery.

December 11, 2013:
The weeks before, I lined up all my pre-op appointments to this day, including the anesthesiologist, and measurements taken of the arm/hand by PT.
Dr. Chang drew with a black Sharpie lines where the incisions will be, took several photographs for documentation, and I signed all papers necessary. He also promised me to inject dye into my finger area, and depending what will be visible, he’ll perform micro-bypasses at my lower arm. And my Friday early morning surgery time has been pushed to 12noon, because he wanted to have as much open time as possible. – Much needed, turned out.

Friday, December 13:
I was so ready to be prepped for surgery, but some complications before my case were occupying the surgeons. Finally, by 2:30 pm, I was wheeled into the OR, and 6 ½ hours later woke up from the anesthesia. I guess, I’m a lucky person not being allergic or even sensitive to any of the many chemicals put into my body. The surgical team said everything went well. I was freezing cold, felt dehydrated, but so heartwarming happy and elated, beyond any description. IT has happened.

Day 2 post-op:
I observed the young assistance doctor opening my very lightly wrapped arm. He showed me 4 incisions with two successful bypasses at my wrist. I was tearing up, because I could already clearly see and feel the difference. The arm was so soft, lighter in weight and less in circumference as I could only achieve with the heavily padded JOVI sleeve plus wrapping on top of it for days in a row.

Day 3 post-op:
I was discharged from the hospital and my husband settled me into our comfortable hotel room not very far from the medical campus (Hyatt Place runs a free shuttle to/from the medical center). Now, I’m on pills for pain control and antibiotic, but besides the first 3 hours after the “moving”, the pain was well controlled.

Day 4 post-op:
The first visit with Dr. Chang went very well. He was pleased over the outcome, the stitches are holding well, so the scarring should be minimal (we’re still talking major incisions). He was able to remove the JP drain at the axillary, and instructed me to NOT put any pressure or pull on the surgical site were the new lymph nodes have been implanted. I’m not to lift my arm more than about 33 degrees for the next two weeks. The lymph nodes should have settled in by 6 weeks after surgery.

Day 7 post-op:
I wake up every morning with a smile on my face, realizing my dream has come true. My body finally will recover from the horrible side effects of radical breast cancer treatment. The constant drain and battle is over. I do not care about any of the to expecting scars; I’ll wear them like a diamond necklace (funny, the price might be the same ;-))

The donor site incision’s drainage keeps weeping way too much fluid to get the drain removed. However the liquid is rather yellowish-clear, not bloody and I’m getting used to the thought to fly home to Seattle with the JP drain at my collarbone still attached. – Minor sideshow, no big deal, or maybe even a good thing as it reminds me to be very, very gentle with my body as I’m traveling home. Besides an occasional lightheadedness walling up, I’m feeling so well, it’s almost too easy to get into old natural routines.

This has been a long and dark journey. It ripped me out of the happy life I knew with brutal force, made me depressed and tearful, and it’s now time to be closed happy and tearful. I know it’ll all be good, I trust. Thank you, Dr. Chang.

Thank you so much Lisa for sharing your journey with us…. Now to relax and heal… This is a link to Lisa’s Blog if you would like to read more from Lisa and enjoy her wonderful art works… http://think-quilts.com/

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Part 2 Breast Cancer, Lymphedema and Lymph node Transfer by Lisa Jenni

imageLessen learned: You have to be your own advocate and trust your gut feeling! By Lisa Jenni…

The lymphedema started already a few days after surgery, my shoulder/upper arm seem to swell up quite a lot on the back side, way more than the usual post-surgery seroma, and at a place where no surgical damage occurred. Asked about it, the surgical oncologist said nothing went wrong during surgery, and I’m unfortunately “on of them”. Soon, all lymph nodes, one by one down into the elbow area started to act up badly and each one was a very swollen painful bubble. I started to research the internet and found soon the Lymphedema Research Foundation. A private friend (RN) checked in with me on the phone and I told her how it looks and feels. There was a long pause on the phone, then she sent me all information she could find on LE, and recommended MLT immediately, but still it took weeks to get me an appointment.
January 20, I started my first round of chemo (of 4). At the first post-op visit, my medical oncologist was extremely surprised over the quick and high degree of my lymphedema. She said, she’s never had a patient with such severe Lymphedema. The shock in her eyes told me she’s at a loss, but immediately took to the phone and got me 10x MLD prescribed and some kind of over-the counter stocking for the arm with a clove. Looking back this was a ridiculous wimpy approach to my booming lymphedema. Two massage therapy sessions per week (really?) – are NOT even covering the beginnings of the dilemma. I was repeatedly told I need to wrap my arm 24/7 and rest it hand high up. Of course a part of it was teach me how to do the self massage, but to be honest, the only thing that happened was, I got really bad tendonitis on the one healthy arm I had left. I started panicking, – I felt so lonely, stupefied and helpless like never before. But still, my gut feeling told me, time is of essential, despite the very slow grinding mill; it took until end of May until I got my first manufactured-to-my-measurements garment (Jobst).

At this point, I was in scrambles. Even worse, by now, the impact of chemo had me completely overrun, and no matter what I did, the swelling kept creeping up uncontrollable. My arm looked like a balloon and the skin felt if it swells only a bit more, it’ll pop open. And I knew, radiation would follow, 35 times beaming into an area of my body already deeply compromised.

Due to our move to the US, I experienced long 5 years of having no work permit until I got the Green Card, so I went back to art school, started quilting and went back to my roots as a watercolor artist, founded think-quilts.com. Now self-employed, I didn’t exactly loose my job due to lymphedema, but there was also zero chance to get employment if I wanted to. Within a few months, I became a disabled person without access to benefits. Never mind, just before the recession hit, we bought a smaller house, and at the exact time of my diagnosis, the bottom of the economy fell out, we just moved and had our old house on the market, on top of it, even my husband’s job at the big high-tech company wasn’t safe anymore. An air of deep depression engulfed both of us.

The weather in 2009 wasn’t cooperative: That particular late spring and summer created the most intense heat wave ever recorded in the Northwest. We had weeks during that summer with triple digit temperatures 103F, 104F and climbing. Everyone enjoyed “for once not a rainy summer!”, for me it felt like a death sentence. The Pacific Northwest has usually a moderate climate with only a few very hot days (mid 90’s), so most houses don’t have AC. I was suffering badly. Heat is a great enemy of lymphedema.

At some point after radiation ended and the effect of chemo lessened, I gained some brainpower back. I found at my local fitness club a personalized 16-week program (incl. psychological support), which is designed to put people with a heart decease, obesity, or after accidents back on track. I asked my oncologist if she could write me a recommendation, so the insurance would pay little less that ½ of the cost ($6400 total), and it was granted. I called it “Cancer Rehab” which doesn’t exist for real, but this was the best that happened to me in a long time. After finishing the program, I’d lost 50+ pounds; I gained back my strength and was physically fit to actually enjoy the upcoming skiing season.

Having gone thru hell and back, this should be a standard for all cancer survivors who endured all three phases: Surgery, Chemo and Radiation. As of today, only heart disease, stroke and accident patients are getting scheduled for rehab.

My lymphedema lessened bit by bit in micro-steps during the personal training and diet. Please note, before I ever stepped on any treadmill or held any weight in my hand for lifting, I religiously wore the fitted Jobst sleeve (even I hated every second of wearing it). I am certain, the weight I lost made a big difference in circumference of my arm, and since there was less of a layer of fat, the compression garment worked better. These garments apply pressure to the whole limb, but the transport of lymphatic fluids only works via lymphatic vessels and veins, which are embedded into or closely attached to muscles. The more you move your muscle mass, the more “stimulation/massage” happens to the lymphatic system. Its easy to understand how a layer of cushioning fat can limit or eliminate this effect. This is one of the main reasons why a skinny person will have more success with any of the compression garments and MLD. Soft-cushioning fat is your enemy.

Here a word about the compression garments for arm and hand

Every single sleeve made to my specs was manufactured by the German company Jobst, – and this is supposed to be the “Cadillac” of these sleeves. I say, no way!
The knit fabric is itchy like hell, and I’m sure the clove part hasn’t seen any improvement since it’s invention. All wrong! I’m a painter, I’ve studied the human body in drawing; I do know how a hand looks like. The anatomy of a hand has a “webbing” were the fingers come out of the palm, and by close inspection seen from the top, it is a triangle slowly widening toward the knuckles. The inside-end of the webbing is delicate skin in order you can spread out your fingers like a V. For ages, every Italian fine leather clove maker knew how to add a little triangle on the top to the finger root for ease and comfort. But not the way the compression gloves are knitted. It always cuts sharply and painful into the delicate inside webbing, and leaves a triangle gap towards the knuckles to be perfectly filled with lymph fluid.
The arm sleeve has it’s own challenges besides being itchy, it doesn’t discriminate between areas where more pressure is necessary and areas they should stay flat. The arm below the elbow is not round! It’s a rather flat oval between two bigger bones, and most lymphatic vessels run in the groove between these bones, together with the blood vessels. The sleeve makes the area filled up with non-moving lymph fluids, with the result, the lower arm and had look like you’ve blown up a rubber clove with air and made a knot. This turned out to be completely counter-productive for my arm/hand, so I stopped wearing it during normal day activities.

As the years went on, changes in medication prohibited me of any exercise for months at a time, and sure enough, the pounds started creeping back on me. Little by little, despite the fact I tried to live healthy, and efforts to get slowly back into regular workouts and cook from scratch healthy food, – low-fat protein, lots of veggies and fruit, minimized carbs, rarely sweets, no junk food. We go hiking in summer, skiing in winter, but I couldn’t stop the lymphedema from progressing.
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Part 1…Breast Cancer, Lymphedema and Lymph Node Transfer by Lisa Jenni

Lisa made contact with me and has been happy to tell her story, from her Breast cancer diagnosis, treatment and start of Lymphedema, through to having a Lymph Node Transfer and Lymphatic Bypass this month with Dr Chang. Surgery for Lymphedema of the arm is more advanced than that for the leg and from what I hear there are some good results… I am happy to share this personal account, which I have divided into three parts… Welcome and thank you Lisa..

imageHere is my story, or better – Journey – and how it started By Lisa Jenni

First of all, I must say, we’re our own best advocates.
I found the tumor
through my regular self-exam.
…and that’s why I’m still here to tell my story!

Never since I turned 40 have I skipped a mammogram, however I changed dramatically providers. The biggest change was moving from Munich/Germany to the Seattle area in May 2000. Suddenly, I had to look for all new health care providers, but I was lucky to find early on a really good general physician. This is where the rainbow comes down and the pot of gold is right there. She’s good.

Two years before the diagnosis, – I just turned 50, I started telling every time each of the RNs who’s in charge of the mammogram to please look very closely, and about my fear something deep in my left breast wasn’t right. I was repeatedly waved off as “overly sensitive” and having “lumpy breasts” and if there would be something, it would not hurt. Their opinion didn’t waver a bit when I wrote down on the paper form and told them that my grandmother died from breast cancer at the age of 75, my mom just went through her own breast cancer at the age of 76 (what I didn’t know, my mom’s younger sister, – my aunt, was just a year out of her breast cancer surgery, with lymphedema in her arm! My mom never told me until I was hit).

I kept doing my self-exams and stayed alert.

In February 2008, I told my GP during the yearly routine exam “that very deep down in my left breast, something isn’t right”, and she immediately sent me to a diagnostic mammogram (which ended up to be a biopsy under ultrasound). The area they punctuated with the straw needle revealed a few calcifications and I was sent me home taped up with a flower and pity smile. But I still new IT was not right. At least, once I have had a biopsy, the follow-ups are ½ yearly. The next was scheduled for November 8, 2008, just after my first fun trip to the International Quilt Festival in Houston, TX.

From there, it became a whirlwind of appointments.

The diagnostic mammogram and ultrasound showed and unclear situation in the area I described for such a long time. The new radiologist on duty that day was not satisfied, instead she scheduled me for another straw needle biopsy on November 10. That’s when they found not one, but two tumors. They nested right up on the chest wall and bone, and where quite big as the 3rd biopsy under an MRI a few days later revealed. The area close to the chest bone is hard to catch on a mammogram, pure physicality. But what’s shocking, with my history and telling, I would have been eligible for an MRI much earlier, already instead the first straw needle biopsy. She just shook her head in disbelieve why it wasn’t found earlier.

Diagnosis:
Stage 2+ ductal invasive breast cancer, estrogen receptive.
November 10, 2008.
I was 52 ½, pre-menopausal.

After the diagnosis, everything went quickly towards surgery. The tumors were clean-edged and not spread out, so a lumpectomy was performed on December 19th, 2008. The margins came back clear. But 4 sentinel lymph nodes were removed and tested, 2 came back positive, 2 negative. The surgical oncologist recommended STRONGLY undergoing an auxiliary dissection, which was done January 9, 2009.
Before surgery, I tried to sponge up as much about Lymphedema off the internet as I could, so we did have a lively discussion about it. He did not hide that Lymphedema is a possible outcome of the lymph node removal, although he claimed statistically only 19% of all patients would develop it (I am sure, this number is highly underrated due to non-diagnosis of LE. And this is still almost one of every 5 surgeries). I was very wary of this possibility. From the beginning on, I had a gut feeling “I’ll be one of them”, so I tried to wind my way out of this surgery, but the pragmatic doctor, my husband and lastly even I got convinced the last thing we ever want to see is returning cancer.

All surgeries were outpatient procedures.

NOTE: A study published in the NY Times, June 7, 2010 shows there is next to no difference in return rate of cancer to patients who had a lumpectomy and whether an Axillary LN dissection was executed or not. So it did not make me any safer, instead it was actually in vain.

Clinical Breast Cancer

Clinical Breast Cancer (Photo credit: Wikipedia)

 

Lymph Node Transfer after Breast Cancer Treatment..

logoJust sharing with you this comment that was posted on my blog… Comments can get a bit lost especially if they are on an older item, however I felt this was important to share.. This is a lady’s experience of surgery after Breast Cancer to help her Lymphedema… Thank you for sharing this with us…. An Experience of Lymph node transfer and Lymphatic Bypass for Lymphedema of the arm.

I was diagnosed with breast cancer (left) in Nov. 2008. Soon, a lumpectomy followed (sentinels: 2pos./2neg), so 3 weeks later a pre-cautionary auxiliary dissection surgery was performed. Ever since mid-January 2009, I have been suffering from severe lymphedema (stage3) on my left arm. Chemo followed, radiation (May-July) didn’t make it better either. I tried everything “Under the Sun”, all types of treatment, but none of these could provide me with any satisfying relief, except “Jovi” sleeve. This was the only garment I could apply and it would at least keep the arm from harding out and advanced fibrosis. Day-use compressions made it way worse, especially around the lower arm and back of the hand (“Popeye”-effect). Every night, the heavily padded JOVI sleeve returned some or most of the fluids, but even after 5 years of religious use, it became clear the progress of the decease will creep up year after year. Its only a matter of time that a tiny injury might cause blood poisoning. BTW, my insurance declined “Flexi Pump” as too experimental, which hit me very hard! I totally agree with Christine’s and your report what an enormous and constant emotional drain this condition is (FYI, the insurance accepted to carry the Reconstruction Surgery!).

Already in January 2009, I found and signed up for the Lymphatic Research Foundation (recently changed it’s name: http://lymphaticnetwork.org), which is an online forum and newsletter. Last June, the LRF held an online symposium containing extremely informative and encouraging videos about new surgeries Dr. Chang has been developing and was performing in Houston/TX.

As I’m writing this comment here in a Chicago hotel room, I’m literally just recovering from my Lymph Node Transplant and Lymphatic Bypass surgery he performed last Friday (12/13) after noon. After a 6 1/5 hrs surgery, I spent 3 days as an inpatient. Since I’ve flown in from Seattle for Dr. Chang’s surgery, my husband and I “relocated” to a hotel last afternoon (never mind, drains still attached). What I’m trying to say is, being from out-of-town is fairly easy to handle here.
I’m feeling and doing very well, every now and then, tears of relief and joy float up, but I certainly will happily wear my scars from any part of this life- and mind-altering and reconstructive, surgery. I feel I am a warrior who will wear this neck scar like a diamond necklace!

So, please anyone, keep building on this blog’s very helpful information. BTW, although most patients impacted by lymphedema are woman, it’s not gender specific: men can get it too, i.e. while receiving Prostate Cancer treatment.
Tomorrow, I might be able to report about my first post-op visit.

Thank you for allowing me to create a post out of this and I look forward to further updates as you rest and heal… Helen

Steps

The first step in the road less travelled

Good news for those with Lymphedema living in California

Health

Health (Photo credit: 401(K) 2013)

Insurance Coverage of Lymphedema Compression Bandages and Garments Starts Jan 1, 2014 in California.

Robert Weiss, MS
Independent Lymphedema Patient Advocate

The Patient Protection and Affordable Care Act (PPACA) stipulates that all new insurance policies offered in the “Marketplace” effective January 1, 2014 must cover certain “essential benefits” enumerated in the Act. [Ref. Public Law 111-148 Patient Protection and Affordable Care Act §1302(b)(1)(A)-(J)].

The ten covered essential benefit categories are as follows:
• Ambulatory patient services
• Emergency services
• Hospitalization
• Maternity and newborn care
• Mental health and substance use disorder services, including behavioral health treatment
• Prescription drugs
• Rehabilitative and habilitative services and devices
• Laboratory services
• Preventive and wellness services and chronic disease management
• Pediatric services, including oral and vision care

The Act, however, does not define what is covered within these categories, and insurance firms can still pick and choose to some degree which specific therapies they’ll cover within some categories of benefit. And the way insurers interpret the rules could turn out to be significant for people with disabilities who need ongoing therapy to improve their day-to-day lives or prevent degradation.

For instance, insurers could choose to cover physical therapy for someone with a broken bone, but not cover long-term support services for chronic conditions, such as lymphedema. The level of benefits insurers have to provide in each category is based on a “model policy” in each state, and some of those model policies are more generous than others.

Also, it is not clear yet how the March 2013 Jimmo VS Sebelius settlement, which eliminates the “improvement standard” in Medicare, will affect the state insurance contracts commencing in 2014.

In anticipation of the need to provide further guidelines to California insurers, the CA Department of Managed Health Care (DMHC) added a new section to Title 28 California Code of Regulations.

Emergency Regulation 2013-4186 added Section 1300.67.005 Essential Health Benefits to Title 28, which became effective on July 5, 2013
[http://www.oal.ca.gov/res/docs/pdf/emergencies/recent%20action,%20moved%20emergencies/2013-0625-02E_App.pdf ]

Included in Section 1300.67.005 Essential Health Benefits (in addition to those services and devices required to be covered under the Knox-Keene Act) was subsection (d)(9)(B)(iii) that included:
“(d) Other health benefits are essential health benefits and are required to be covered as follows:”
“(9) Prosthetic and orthotic services and devices in addition to those services and devices to be covered under the Act.”
“(A) Coverage includes fitting and adjustment of these devices, their repair or replacement (unless due to loss or misuse), and services to determine whether the enrollee needs a prosthetic or orthotic device. …”
“(B) The plan shall cover the prosthetic and orthotic services and devices substantially equal to the following:
“(iii) Compression burn garments and lymphedema wraps and garments, …”

It is extremely gratifying to see how, through a combination of hard work, perseverance and good luck, California lymphedema patients will be covered for their compression bandages, garments and devices 14 years after I initiated action on behalf of my wife Pearl. It is also satisfying to know that these essential items are considered to be “prosthetic device” benefits, a truth I have been unsuccessful in making CMS understand despite confirmatory rulings by dozens of U.S. Administrative Law Judges.

See my LymphActivist’s Site at http://www.LymphActivist.org for details of the events leading to the upcoming coverage of lymphedema compression items.

Thank you Robert Weiss for bringing us this very exciting news and the work you have done towards it… here is a link to the Lymph Activist’s site… http://www.lymphactivist.org/index.php

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Features of unproven stem cell treatment..

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Mouse stem cells .. Wikipedia

Anyone who has an illness or health issue, with no apparent cure, is very vulnerable to treatments such as stem cells that have not been proven and which could in fact be dangerous. Those of us with Lymphedema fall into that category. There is some confusion around this treatment and I was very glad to find this website which has clear easily understood explanations of what is happening with Stem Cells… Also how to identify medical centres promoting unproven treatments…although referring to Australia this information forms a basis for all other countries.

National Stem Cell Foundation of Australia

Features of unproven stem cell treatments….. 

Unproven stem cell treatments are those where doctors offer to treat patients without first properly evaluating the proposed treatment, effectively circumventing the clinical trial process.

Unlike the careful pace of legitimate preclinical and clinical stem cell research (as explained above), the doctors offering unproven stem cell treatments are effectively selling hope with little or no medical or scientific evidence to back up their claims around both safety and actual benefit. These unproven, highly experimental treatments also are not cheap, with prices ranging from $9,000 to $60,000 per treatment, and patients are often encouraged to consider multiple treatments.

Having heard about stem cells and the promises that these cells may hold for regenerative medicine, for many Australians it is difficult to recognise that the treatment is unproven. Many of these services are promoted on very impressive websites, with persuasive patient and/or carer testimonials supporting the benefit of the treatment. However there are some simple points to consider which will help you to identify providers of unproven stem cell treatments…..

Points to check if Stem cell treatment is unproven….

1 Scientific rationale is not made clear
2 Evidence of safety and efficacy in preclinical (animal) models is not provided or referenced
3 Treatment plan has not been peer-reviewed by an Ethics Committee
4 Payment is required
5 Benefit the practitioner (financially) and the patient (possibly)
6 Offered to patients who feel they have no other viable alternative
7 Offered by direct marketing (eg via the Internet) and often for a wide range of unrelated conditions
8 May be offered by doctors who are not experts in the condition being treated
9 May be performed at institutions with no track record of publications and research
10 Fully informed consent is often not obtained
11 Legal recourse if something goes wrong is often not clear
12 Medical insurance eligibility is often not clear
13 Limited or no long-term care or follow-up provided

For many years there has been concern about patients travelling overseas for unproven stem cell treatments that are not available here. Such travel is often referred to as stem cell tourism. However in recent years, there have been a growing number of Australian doctors and medical clinics offering unproven stem cell treatments here in Australia.

The fact that such treatments are being offered in Australia can make it more difficult to determine if the stem cell treatments are legitimate. Especially when the treatments use your cells.

Despite the exacting standards usually imposed by the Therapeutic Goods Administration (the TGA – which is the Australian regulator of all medical devices, drugs and biologicals), there is currently a controversial loophole in our Australian regulations. This means that unproven stem cell treatment is excluded from the regulatory framework provided the treatment is being offered by a registered Australian doctor, is using the patient’s own cells and is a one-patient treatment. It is not a requirement that such treatments have to be first proven safe and effective in clinical trials.
The treatments using the patient’s own cells are often marketed as having ‘no risks’ and are ‘natural’ because the cells come from you (ie are autologous). It is important for you to know that even treatments using your own cells can be dangerous. There have been reports of cells from fat growing into bone, as well as deaths reported overseas.

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Embryonic stem cells ..Wikipedia

When deciding on what is best for you, not compromising the health that you do have, is an important consideration. Excerpt taken from the The Australian Stem Cell Handbook… http://www.stemcellfoundation.net.au/patient-information/handbook
With Thanks for their work in de-mystifying this area…

Fight for what you want…

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Living with Lymphoedema often leads to frustrations with ourselves and others.. Frustration with doctors who do not understand, frustration with the lack of treatments available, frustration with the lack of health cover available, frustration with the 24/7 presence of Lymphoedema, frustration with the daily routine that we need and so the list goes on!! However we need to push through all of these to live our lives the best that we can. We can fight the system for what we need, we can push for better recognition and understanding of Lymphoedema and we can push for a better future for ourselves and others…. Together we can support each other in this…

Today I also want to bring you two blogs that could be of interest to you… These are personal accounts of living with Lymphedema… Thank you Monique and Lymphedema girl for creating them….

Lymphedema Runner
Lymphedema Girl

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