Research from Japan brings hope……. Medication to treat Lymphedema!

imageThese are copies of two press releases sent out by Pharmaceutical company AnGes MG, Inc in 2012. One is to patent the medication Collategene for treatment of Lymphedema, the other is to initiate the first world trials on Gene therapy (Collategene) for Lymphedema, these trial are initially for Primary Lymphedema. I do not pretend to understand how this all works! There is so little help for Primary Lymphedema as few are suited to lymph node transfer surgery due to lack of nodes in their bodies, which means there is no safe area to harvest nodes to transfer, which leaves liposuction and debulking procedures.

I do note however, that these press releases state they have also worked out how many people have Lymphedema world-wide, and are thinking about how much profit can be made from this drug!! Well I guess that is ok if it has pushed them into putting their money into research, at last, for Lymphedema, as it has been so neglected  in the past. We hope that years to come people will benefit from this medication. It seems like a dream now but there is always hope.
imageFOR IMMEDIATE RELEASE

October 1, 2012 AnGes MG, Inc.

New Medical Use Patent for HGF Granted in Japan for Lymphedema

AnGes MG, Inc. (“AnGes”) is pleased to announce that a medical use patent has been granted in Japan for HGF plasmid drug which promotes lymphangiogenesis, and the Patent Gazette (JP5036057) has been issued.
The patented invention features therapeutic agents which contain HGF plasmid as an active ingredient and promote lymphangiogenesis, and is administered directly into the affected or peripheral area by intramuscular injection. This patent, along with the previously granted patent JP4111993 for therapeutic agents that prevent or treat lymphedema, protects the new treatment of lymphedema using HGF plasmid from various aspects.
Lymphedema is an intractable disease in which impaired lymphatic system causes severe swelling and fluid retention in limbs by preventing lymphatic fluid from returning to lymph vessels. There are two types of lymphedema: 1) “primary lymphedema” which the pathogenesis is unknown, and 2) “secondary lymphedema” which occurs due to aftereffects of lymph node dissection in e.g. cancer surgery. The existing treatment for lymphedema is mainly focused on complex decongestive therapy by massaging the affected limbs and using compression garments. However, this treatment is symptomatic and should be continued throughout the life. Furthermore, there has been an increase in lymphedema cases among elderly patients in recent years who are unable to perform physical treatment on their own. For these reasons, a development of a new treatment for lymphedema is highly desired.
AnGes has been developing HGF plasmid “Collatege®” for the treatment of Critical Limb Ischemia and now started the research development of lymphedema treatment utilizing Collategene®’s action to promote lymph vessel formation. The confirmation was received from the Ministry of Health, Labor and Welfare (MHLW) on July 18, 2012 that clinical trial plan of Collategene® in lymphedema complies with the guideline for confirmation application, and AnGes’s IND application for Collategene® as a treatment for lymphedema was accepted by Pharmaceuticals and Medical Devices Agency (PMDA) on July 30. AnGes is now taking necessary procedures to initiate the clinical trial.
The grant of this patent enables AnGes to further strengthen the new treatment approach for Lymphedema using HGF plasmid, and strongly supports the development project for a long-term. AnGes strives to obtain medical use patents for other applications of HGF plasmid in order to further strengthen its patent network.
This trend will have no effect on the business performance for the fiscal year of 2012. ###
Disclaimer: This is a translation of the news release posted in Japanese. In case of any deviations between the two language versions, the original document in Japanese shall take precedence.
AnGesMG,Inc.
Corporate Communications TEL:+81-3-5730-2461, FAX:+81-3-5730-2635 http://www.anges-mg.com Email:info@anges-mg.com

image

FOR IMMEDIATE RELEASE

AnGes MG Submits an IND Application for CollategeneTM (HGF DNA Plasmid)

July 30, 2012 AnGes MG, Inc.

– Initiation of the World’s First Clinical Trial on Gene Therapy for Lymphedema –

AnGes MG, Inc. (“AnGes”) announced today that their IND application for CollategeneTM (HGF DNA Plasmid) as a treatment for primary lymphedema has been accepted by Pharmaceuticals and Medical Devices Agency (PMDA).
The clinical trial is planned to ensure Proof of Concept (POC) study for primary lymphedema and is the first Phase I/II trial to be conducted with patients. In this trial study, CollategeneTM will be administered intramuscularly to patient’s affected legs which are swollen by more than 20% compared to the healthy legs, and the changes to the volume of edema will be assessed to investigate safety and efficacy of CollategeneTM.
Lymphedema is an intractable disease in which compromised lymphatic system causes severe swelling and fluid retention in limbs by preventing lymphatic fluid from returning to lymph vessels. There are two types of lymphedema: 1) “primary lymphedema” which the pathogenesis is unidentified, and 2) “secondary lymphedema” which occurs due to aftereffects of lymph node dissection in e.g. cancer surgery. The existing treatment for lymphedema is mainly focused on complex decongestive therapy by massaging the affected limbs and using compression garments. However, this treatment is symptomatic and should be continued throughout the life. Furtheremore, there has been an increase in lymphedema cases among elderly patients in recent years who are unable to perform physical treatment on their own. For these reasons, a development of a new treatment for lymphedema is highly desired.
Development for the treatment of Critical Limb Ischemia using CollategeneTM has been ongoing at AnGes and now the research development of lymphedema treatment utilizing CollategeneTM’s action to promote lymph vessel formation has begun. With the confirmation received from the Ministry of Health, Labor and Welfare (MHLW) on July 18, 2012 that clinical trial plan of CollategeneTM in lymphedema complies with the guideline for confirmation application, AnGes is ready to initiate the clinical trial for lymphedema treatment with CollategeneTM, the world’s first effort in treating lymphedema utilizing lymph vessel groth function. That being said, CollategeneTM has a potential to become a radical treatment.
AnGes plans to initiate the clinical trial promptly after taking necessary procedures, and strive to pursue the development in order to provide the new treatment for patients who suffer from lymphedema.
Once the company completes the POC clinical trial with patients with primary lymphedema, AnGes plans to start with the development for secondary lymphedema. It is reported that secondary lymphedema occurs in about 30% of patients who underwent uterus cancer surgery, and 50% of patients who underwent breast cancer surgery. Based on these figures, it is estimated that more than 1 million patients are suffering from lymphedema in seven major industrialized nations, with an approximate market size of 50 billion yen a year.
This trend will have no effect on the business performance for the fiscal year of 2012.
(Reference)
Gene Medicine
###
A drug which utilizes gene or a part of gene as active ingredient.
HGF(Hepatocyte Growth Factor)
A growth factor developed from hepatocytes; in addition to blood vessel regeneration, it initiates various processes necessary for tissue / organ regeneration during organ formation (organogenesis).
Lymphedema
Lymphedema is an intractable disease in which compromised lymphatic system causes severe edema in limbs by preventing tissue fluid from going back to lymph vessel, causing it to be retained under the skin. There are two types of lymphedema; 1) “primary lymphedema” which the pathogenesis is unidentified, and 2) “secondary lymphedema” which occurs due to aftereffects of lymph node dissection in cancer surgery, etc. There is no effective treatment method established for lymphedema while it chronically progresses and is exacerbated over time, declining patients’ quality of life.
Peripheral Arterial Disease
Narrowed or blocked peripheral blood vessels in the four limbs causes ischemic condition in muscle and skin tissues, with the following symptoms: a feeling of paralysis, coldness, intermittent claudication, ulcer of lower limbs (thrombic disease) or rest pain. It includes arteriosclerosis obliterans and Buerger’s disease.
Proof of Concept (POC)
A proof of concept (POC) is a demonstration to verify that a fundamental finding or concept has the real-world application. In development of drugs, POC refers to examination of a drug candidate compound for a certain disease in real patients after its effect was indicated in animal models.
Disclaimer: This is a translation of the news release posted in Japanese. In case of any deviations between the two language versions, the original document in Japanese shall take precedence.

AnGesMG,Inc.
Corporate Communications TEL:+81-3-5730-2480, FAX:+81-3-5730-2676 http://www.anges-mg.com Email:info@anges-mg.com

AnGes has the pharmaceutical company Vical as it’s representative for the United States.

“Collategene™
AnGes has applied Vical’s technologies to the local delivery of a gene that encodes an angiogenic growth factor that promotes the growth of blood vessels. AnGes announced that it had reached agreement with the FDA regarding a Special Protocol Assessment for a Phase 3 clinical trial of its angiogenesis product, Collategene™ (HGF plasmid), and that the FDA has granted “Fast Track” designation to Collategene™ as a treatment for critical limb ischemia (CLI), the severest form of PAD. AnGes is poised to start a global Phase 3 clinical trial of Collategene™ in patients with CLI. AnGes is also conducting a Phase 1/2 study for the treatment of primary lymphedema in Japan, for which the results are expected in the latter half of 2014.” .. Infomation from the Vical web site… http://www.vical.com/About-Us/overview/default.aspx

June 6, 2014 AnGes MG, Inc.
Grant Amount for “2013 Venture Aid Program to Promote Practical Application of Innovation” Confirmed by NEDO
Regarding CollategeneR (DNA Plasmid with HGF Gene) Lymphedema Project
AnGes MG, Inc. (“AnGes”) announced that the grant amount has been confirmed for the “2013 Venture Aid Program to Promote Practical Application of Innovation” by the New Energy and Industrial Technology Development Organization (NEDO). As announced by AnGes on May 15, 2014, the CollategeneR lymphedema project was selected for NEDO‘s program.
Project name: Grant amout: Period:
Clinical Development of Lymphedema Treatment Drug using HGF Plasmid
79,808,000 Yen
(Maximum amount equivalent to two-thirds of actual project costs) May 29, 2014 to February 28, 2015
Details of the program are as announced in the press release “CollategeneR (DNA Plasmid with HGF Gene) Lymphedema Project Selected for NEDO’s Venture Aid Program” on May 15, 2014.
The grant money is expected during the fiscal year ending December 2015, and this will have no effect on the business performance for the fiscal year 2014.
###
Disclaimer: This is a translation of the news release posted in Japanese. In case of any deviations between the two language versions, the original document in Japanese shall take precedence.

AnGesMG, Inc.
Corporate Communications TEL:+81-3-5730-2641, FAX:+81-3-5730-2635 http://www.anges-mg.com

More info… http://www.anges-mg.com/en/project/proj_develop.html
image

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Lymphedema Awareness and Breast Cancer

imageReblogging this as it is such an important topic after treatment for Breast Cancer… It is that nasty hidden secret known only to those who have it or live closely with someone who has it… Thanks so much Denise

March is Lymphedema Awareness Month.  I deliberately posted this toward the end of the month because we all put Lymphedema at the end of the line in Breast Cancer.   As someone who lives with the realities and challenges of Lymphedema every day,  I am passionate about warning Breast Cancer Patients to PAY ATTENTION and get help and information about Lymphedema.  Make sure you have attended a Lymphedema Class and  arranged a consultation with a Lymphedema Therapist immediately after breast surgery.  Preventative actions, treatment and knowing what to look for can help your future in a big way.    

If you even have had one lymph node removed, you can get Lymphedema. Surgeons and Oncologists may tell you otherwise.  Do not listen to them!  I have had plenty of letters from women who had been told, “Don’t worry, you aren’t at risk for Lymphedema” by a physician and then BAM!  Lymphedema hits in full force…

View original post 228 more words

There is always hope.. Maureen’s story

Image from Wyatt rehabilitation

Maureen has been following this blog for a while, but sadly missed our gathering in New York, but has been able to connect with the other ladies since. Although we knew she had surgery for her Lymphedema we did not know her full story till recently. I was moved by the depth if despair that Maureen reached, living each day with Lymphedema and it’s complications. That she reached a level where she felt that amputating the leg would be better than continuing, shows how severely LE can impact on people’s lives, both mental and physical. Maureen was fortunate to have an oncologist who did everything he could to find treatment for her Lymphedema, we need more doctors like that, who do not think their job finishes when the cancer is gone!!

Maureen’s story took me back about ten years to when a friend rang me, she asked if I would speak to her brother. Her brother had surgery to have a melanoma removed and now had Lymphedema, was experiencing severe swelling and infections. He told me that he would rather have the leg amputated as it was impacting his quality of life, he felt an artificial leg would be a better option. We spoke about types of treatment, about exercises and massage that may help. Very soon I realised that no one had given him these options. He did not know about complex bandaging to bring the swelling down, then fitting for compression garments. He had not been told about Manual Lymph Drainage or the benefits of swimming and walking to move the lymph. No one had educated him in how to care for his leg now he had Lymphedema. This story had a happy ending in that he found a Lymphedema therapist, did a few weeks of Complex bandaging, was fitted for a garment and started to take a prophylactic antibiotic to guard against infections. His life turned around, as a surfer he was able to get back in the water, which was a great exercise. Living with Lymphedema is a 24/7 care situation but it can be done.

Sadly another story I read recently was of a young girl, in her 20’s who did have her leg amputated. This really disturbed me as I could not believe a doctor would agree to such treatment. There was not a lot of detail but she had Lymphedema for the past five years after cancer treatment. There was a picture of her leg, and although not the worst I have seen, it was 65lbs but not distorted in shape and the skin looked smooth. I could not help but wonder if she had been offered other treatment, had it not worked, was it available or was it unaffordable? I cannot imagine what leads someone to such a decision, or a doctor that would not look for other options such as Lymphatic Liposuction, bandaging, compression etc. It breaks my heart that LE can bring such misery to someone’s life yet it is such a secret side effect of cancer treatment that many have never heard of it. In contrast Maureen’s story is one of  success initiated  by a doctor who believed there had to be a better way.

image

Maureen’s story in her own words..
“My story… I had stage 3 Melanoma and the surgery was June 18, 1992. They removed all lymph nodes in the right groin area because I had cancer in pretty much all of them. I was told I would have “slight” swelling!! I was fine with that because I didn’t know any better. I was told I would probably need to wear compression stockings, again not knowing anything about Lymphedema. It wasn’t until my honeymoon the next year that I noticed that the heat in Mexico bothered my leg but I did wear the stocking faithfully. It started to swell a little not too bad. Once I hit my 5 year remission I asked the oncologist if I could have a baby and he said yes so I got pregnant in March of 96 and in May I got bit by a spider on my leg and that’s when things got really bad! My fever spiked to 105 within 30 minutes and the pain was unbearable(I’m sure you all know). I was rushed to the ER with 106 fever, I told the dr cut the leg off I’m not losing my baby!! It was a long 2 weeks in the hospital but Thank God my baby was fine(he is 17 yrs old) after that infection I started to use the pump and that’s when I started getting infections and more swelling in abdomen. I hated using it! It was a joke in my family to when I was “checking in” at the hospital every month because I had so many infections. After so many years of the leg getting out of control and becoming hard to handle I told the doctor its time to have it taken off. I was done!!! It was deformed and heavy. It cause lower back pain and my hips hurt so badly. I could hardly walk. Then November 2011 my oncologist heard about Dr. Becker and Dr. Vasile doing a conference on LNT so he went because he needed to tell them about me. I saw him the next week for my 6 month check up and he was beyond excited for me to meet them in NYC. I went home called Dr. Vasile’s office and was on the phone with her for an hour! She said she wanted me to meet with her the next day in CT and start the process. I did all the tests that week and the next week I met Dr. Becker. She looked at my leg(as she sat on the floor) and felt it and stood up and said to me ” I can get it normal again” I cried!!! My husband and I went home that day feeling hopeful! I started therapy the following month here on Long Island where I live. My dad died 2 days into my therapy putting me in a depression because he was so excited that I was finally going to get my life back!! I wanted to cancel the surgery and my sister and brother told me no way would my dad want that!! So I moved forward with it. My first surgery was March 13 2012, I met with the drs the day before and they were thrilled how well the leg responded to therapy. The next morning I went into surgery. My poor husband was told it should take about 5 hrs well it was over 9 hrs!! A lot of scar tissue in the right groin area. She transferred a node from the left groin to the right and then cut away a lot of tissue from the thigh and calf. In my case I saw results right away because of how much tissue was removed. After a week I started therapy again and lost so many inches!! I was beyond thrilled!! My second surgery was July 2012 and they took the node from under my arm and placed behind my knee. They also removed a lot of hard tissue from the calf and ankle. Also more lipo on entire leg. So again I saw results right away. My leg looked normal!! I could not believe it!! The 3rd surgery was November 2012 where they removed over 10lbs of hard tissue from my abdomen!! That was all from years of the pump!! Dr. Becker hates the pump!
So now its 2 years later and I feel amazing! My life is back to somewhat normal lol and knock wood no infections!!
Sorry this is so long but that’s my story!!!”……By Maureen
Thank you so much Maureen for sharing this with us, it shows that no matter how bad the situation there is always a better way. I am so grateful to be living in a time when surgery is available to treat Lymphedema and give people a better quality of life than they might have had in the past. Never give up hope, there is a light at the end of every tunnel. Thank you …..
image

The above image is available on gifts etc from http://www.cafepress.com/+lymphedema-awareness+gifts

Copyright © 2013-2014 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Sue’s experience with Complex Bandaging..

Complex bandaging treatment for Lymphedema is time-consuming and restrictive while you have it done. Sue has had great results in combination with her Lymph Node Transfer… Some surgeons do this immediately after surgery and others later. It also depends on finding a therapist or Lymphedema clinic that can do this for you. Sue found it difficult to get this done properly after surgery but then found a new therapist and has had great results. I will be having this done in May to clear the last of the stubborn fluid from the mid leg area and to stimulate the nodes to grow and function more. I have to say it is like having a plaster cast on!!! Not funny but it does the trick. I also note Sue’s comment on how much money is spent on garments and treatment to keep the Lymphedema under control. This is something that not everyone is able to do, more financial help from health services in every country is needed. Everyone should have access to garments and treatment no matter where they live. I will add some links at the end on how to bandage..

Thanks Sue for this latest update and so glad your surgeon and Lymphedema specialist were happy!!

image

My complex bandaging kit… Photo Helensamia

“Helen, I will have more to add to this but yesterday I saw my lymphedema specialist.  She was so impressed that her eyes filled with tears.  She could not have been more proud of my progress.  She had a photo in her cell phone of my leg the last time she saw me — the time she was so disappointed in its appearance.  Now that I had 8 weeks of compression wrapping and wearing a custom garment day and night, the improvement is amazing.  I see the surgeon tomorrow, and I hope that he will be just as pleased.  He, too, was disappointed with the last visit so I am hoping to make him proud, too.  I truly believe most of the improvement is from good compression wrapping.  I had compression wrapping in the past, but it was just a roll of foam, wound up the leg, nothing around the toes or the foot and two large and two small bandages.  The new therapist put foam pieces in stocking nets which I wore on my upper and lower legs, both sides, the toes were individually wrapped and there were compression pieces of foam on my foot and along side both ankles — and the foot was all wrapped up as well.  If everyone could get to a therapist is on top of lymphedema and knows the right way to wrap the leg or arm, there would be a lot greater improvement in their condition.  I never had manual lymph drainage during the 8 weeks I was wrapped and they don’t believe in the pumps.  I know how to wrap properly now so I can always wrap the leg if I notice some extra swelling.  The measurements taken yesterday confirmed that all aspects of the leg were down – as I said, I lost 58% of the fluid from the wrapping.”

image

Wrapping toes too .. Photo google images

“Hi Helen – here is another update — I saw my surgeon yesterday. He was much happier with me than the last visit. I suppose it was because I finally did what he and my lymphedema doctor have been encouraging me to do — wrap the leg and then wear compression garments day and night! He did ask me whether he had done lymph node mapping before the surgery (I apparently was one of his first patients), and I told him that he had not. I think that means he could not be able to tell me whether any new ones had grown. So I will just have to guess at it! No matter, as it is what it is. If the surgery is as successful as yours, I really think they are there growing. My leg looks so much better — sure it is not a match for the other, but it’s good enough! I just know I cannot get lax about the compression garments. My insurance pays 1/2 of the cost — I just ordered one cocoa brown thigh high with toe caps and one blue with toe caps — my share of the cost $750! Now that would not be too bad if they lasted for more than six months. But I will have to replace them every six months. I wanted three stockings – black, blue and brown to match my clothes so that’s why I ordered them.

As far as the pump goes, my doctors do not like them. So I will probably stop using mine — it’s just another thing I won’t have to waste time on. When I think of all of the time and money I have spent since I got lymphedema, it makes my head spin. I don’t know if you remember this, but Betty Grable insured her legs with Lloyds of London. I think I ought to do that, too!.”… By Sue.. Thank you

image

Full leg bandage .. Photo google images

image

Full leg bandage.. Photo google images

This is a link to an article on Complex bandaging and videos to show you how to wrap for legs and arms..

https://lymphnodetransplant.wordpress.com/2013/04/16/complex-bandaging-includes-videos/

Copyright © 2013-2014 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Waiting room get together.. New York

image

Jennifer’s therapist, Kimber, Jennifer and Lori .. Photo provided by Lori

I get so excited when I am sent photos like this, as I know if it was not for this blog, these wonderful ladies would not have the opportunity to get together. Thanks Lori for the great photo. All were gathered at the offices of Drs Becker and Vasilles or as Kimber calls them.. Jules and Beck!! Jennifer and Kimber had met before at our gathering in New York earlier in the year and I was able to tell them that Lori, who lives in California, was also there for her follow-up and to look out for her!! You can imagine the gossip that went on in the waiting room, while they were awaiting appointments, sharing stories and experiences.

Lymphedema can be a very lonely thing to deal with, as often there is no contact with others. Having surgery such as Lymph node transfers and liposuction to help the Lymphedema can be an even more lonely experience, as it is still new surgery. Meeting others is just the best, to talk to someone who understands where you are coming from, to share the ups and downs and the waiting that can only be understood by another in the same position. When you feel down it is great to have others to lift you up and in turn, being able to help another when they worry about the progress, is priceless.

This blog has given me so much and it is a joy to see others getting together and sharing. In this way we bring awareness to our situation and help others who follow behind. When I had my surgery there was no one to contact to ask about their experience. I had no idea of the roller coaster I was heading into!! Now I hope others will feel more prepared by reading this blog and the shared experiences..

Always remember that these are just our personal experiences and do not replace medical assessment and advice. This is major surgery and for everyone it will be different..

Unknown

Copyright © 2013-2014 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

News from Jennifer … March 2014

Jennifer is the “oldest” lymph Node Transfer on this blog. By oldest I mean the longest time since her original LNT!!! Nearly 3 years…. I think I fit into the oldest age wise!! Jennifer has once again taken the time to update us on the progress of her second Vascularised Lymph Node Transfer, (VLNT) to give this procedure its full name, and to let us know her progress. I will put some links at the end of this article so you can catch up with Jennifer’s previous story and progress after her first LNT.. Thanks Jennifer for sharing as always. It helps others so much to read of your experience and you have been a great help to me  when I doubted that the surgery had worked!!! You always said it would be ok!

image

Post surgery.. Picture provided by Jennifer

image

A few weeks after surgery .. Picture provided by Jennifer

“On March 13th 2014 I had a follow-up appointment for my 2nd VLNT surgery in New York. I saw Drs. J. Vasile and C.Becker. The 13th of March was exactly 24 years since my original surgery when lymph nodes were removed as a precaution for spreading cancer cells. None was found in the nodes at the time. I would develop lymphedema 10 years later, slowly progressing with tissue slowly becoming fibrotic.
The visit went very well, and the doctors seemed pleased with the progress I have made. Both Drs. Becker and Vasile agreed that my leg looked really good. I told them I was having a good day lymphedema wise. The incision site looked well healed, though still a red line visible, but will turn white and nearly invisible.
Dr. Becker said she thinks the new nodes are doing their job. I won’t know for sure until I get an MRI which will be scheduled in 3 months. (I will have anxiety about ‘ruining my VLNT’ until I get confirmation that they are healthy and working hard.)
Dr. Becker gave me some great hope, though I’m cautiously optimistic. She felt like I would be ‘normal’ within a year. I specifically asked what she meant by normal, having read and heard her say that about other patients. Last year she told me this as well. She thinks that I will be able to dispense of stockings. But….still need them when flying, standing or sitting too long. But, she thinks that I’ve made a lot of progress, especially when comparing to the first visit. There has been a real reduction, and I think they said 4 cm.
I had my first lymph node transfer in May of 2011, and now my second one on December 5, 2013.
I was not nearly as nervous as I was for the first lymph node transfer when I was scared witless because though I had read plenty about it, and I had spoken to only 1 person who had had it done, I didn’t feel satisfied that I was making the right decision. I was uncertain of the outcome, and my biggest fear then was that I might make an already bad situation worse.
Generally, my regular doctors (not the micro surgeon specialists) had no idea about VLNT and always cautioned me against doing anything ‘foolish’ and/or unproven.
The decision to have a second transfer was to help the congestion in my calf area. And, it was decided that I would have the nodes taken from the right side thorax area and placed just above the knee on the interior of the leg.
I was also going to have some ‘mini’ lipo suction done on my right upper thigh to remove some excess fat that had accumulated as a result of the lymphedema, what I have affectionately referred to as my ‘brioche’ or perhaps we could call it a bagel or a croissant. It was an unsightly bulge at the top of my stocking that stuck out as though I had glued on a thick slice of doughy bread there. I was very self-conscious of the lump and it was on the rise. (Do you like the bread puns?) So, the good surgeons took a very thin slice off, and smoothed it to look similar to the left side. They were very conservative in how much they removed. Though, in my opinion, there was plenty to take, they were very cautious, which I appreciated.
The first week after VLNT was very unpleasant, as I was coming off of all of the drugs pumped into me, and having to take pain meds that make me loopy. I had a lot of pain under my arm where the nodes were taken. This was to be expected since they had to cut into the muscle and stretch open the incision, disturbing and stretching out the nerves. For the first week, it was a burning sensation as though someone had placed a hot iron on your shoulder-blade and forgotten about it. But, that subsided and I was left with numbness. This is an unsettling feeling, though after several months it becomes less and less and eventually as the feeling returns, very gradually, you forget all about it.
I couldn’t wear my usual thigh high compression stockings for 30 days, only the knee highs. The swelling around my knee and above my knee was huge. In contrast, my calf looked great, in fact there was no swelling there at all in that time period. The difference in measurement was an additional  8 cm at the thigh after surgery, which is a lot for me.
I fell into a depression looking at my very swollen limb, and I went through a period of regret. I was scared actually. I thought, what have I done!
I found a wonderful lymphedema therapist. She has primary lymphedema herself. I started seeing her a week after surgery, while my drain was still in. The drain in my thorax had to stay in for 2 weeks. It’s great fun to have to pin the drains to your clothing and even more fun when taking a shower.
I was given the all clear to start wearing my regular compression stockings after 30 days. I also was allowed to use the pool. So, I started swimming, very gently at first, and slowly building up my strength. After 2 months the swelling had subsided quite a bit and now 3 months later, the swelling is nearly all gone. I am still a little more swollen at the knee, and I have light numbness all around the knee and upper calf area.
I have to say that I have absolutely no regret now of having the lymph node transfers. I feel sometimes like I have won the lottery! When I left the Doctors office I felt like a million bucks, and Dr. Becker has a way of making you feel that way about yourself!
I also want to say a great big gynormous thank you to Helen for her fantastic blog. Without the blog I would not have met so many extraordinary and courageous women with whom I have been able to share so much. We feel so much less alone and so much more empowered.” By Jennifer.. Thank you so much.

Below are some links so you can follow Jennifer’s story..

https://lymphnodetransplant.wordpress.com/2013/05/07/two-years-after-lymph-node-transfer-in-new-york/

http://lymphnodetransplant.wordpress.com/2013/06/04/exciting-news-from-new-york-nodes-are-growing/

https://lymphnodetransplant.wordpress.com/2013/09/05/sometimes-lymphedema-just-feels-awful/

https://lymphnodetransplant.wordpress.com/2013/08/08/update-from-jennifer/

image

Copyright © 2013-2014 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Dr Corrine Becker with Lori

image

Dr Corrine Becker with Lori March 2014 provided by Lori

This is a wonderful picture that Lori sent me today from her appointment with Dr Becker and Dr Vasilles in New York, earlier this month. When someone changes your life it is hard to find the words and a hug says it all!! Dr Becker was pleased with Lori’s progress and as time goes by her lower leg will improve more and more. At a later stage there may be a need for a small amount of liposuction to get rid of the fibrous, stubborn areas.

This is a Link to Lori’s story of Primary Lympedema and surgery

https://lymphnodetransplant.wordpress.com/2013/07/17/loris-story-of-primary-lymphedema-and-treatment/

Dr Corrine Becker is the pioneer of Lymph node Transfers and is responsible for teaching many doctors world-wide how to perform this surgery. In Paris she started more than 20 years ago and over the years has perfected the technique. That we have the opportunity to be part of this revolutionary treatment is truly giving hope to many. Over the next few years, with research into medications that help the development of the lymphatics, it feels like we are moving into exciting times.

This is a link to a study in Finland (2014) on Lymph node Transfers, it is long but there are items of interest about the use of Growth Factor written by Tiina Viitanen

http://www.doria.fi/bitstream/handle/10024/94237/AnnalesD1103Viitanen.pdf?sequence=2

image

Copyright © 2013-2014 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Petition in Great Britain for NHS coverage of LNT after Breast Cancer treatment

This morning I received a request via the comments section on my ..Living with Lymphoedema page … I was asked to share this petition, which is a request to the government to include Lymph node transfers on the National health Service in Great Britain. I am sharing this for anyone to sign who lives in Great Britain. Thanks Hillary for sharing with us and I hope you get some joy from this petition.. Every opportunity we get we need to build awareness.. Please continue to share on social media.. Thanks

image

Hi Helen

A year ago I met a surgeon called Ms Anne Dancey at the BMI Hospital in Birmingham who transfers some lymph glands (nodes)from the groin and implants them into the affected armpit. It’s very expensive as it is only available privately at the moment. Although this doesn’t actually cure the lymphoedema, the results she is having are tremendous.

However, this is bolting the stable door, so I am currently running an e-petition in the hope that an earlier intervention will stop or reduce lymphoedema in its tracks.

Please see below. If we can prevent this life changing and very unpleasant condition, then every effort should be made to do so. It HAS to be cost-effective to the NHS in the longer term. This can do nothing but good for our next generation.

I am campaigning to have the surgery I’ve just had made available to everyone on the NHS. It makes such a huge improvement in the quality of daily life because I have to wear the painful, ugly sleeve and glove every single day, or pay for it later with much more swelling if I don’t. Simple jobs like washing dishes and using hand cream are now becoming possible as there is still a little way to go yet. I will also be able to buy “off the peg clothes” with sleeves!!! It doesn’t sound much, but to give you some idea, make a sandwich wearing a glove and wash up afterwards, then rub in some hand cream. This,of course won’t also be painful, but I would never wish that on anyone. As you will discover every minute of everyday is affected.

The surgery will save time and money, both for the sufferer and the NHS. Each day it takes a minimum of 45 minutes to do the physiotherapy and skin care. Then wriggling into the sleeve and glove can take a quite a few minutes too. By eliminating all the follow-up services too such as measuring, use of lymph assist machines and lasering, plus lessons in lymphatic control and the provision of sleeves and gloves, not to mention the training of specialist nurses. Reducing this will save the NHS money, so we will have happier cancer sufferers and at a lower cost, what’s not to like about that?

Please help me by voting for my e-petition by following this link:

http://epetitions.direct.gov.uk/petitions/60819

then click on ‘Vote for this petition’. You will be asked to enter your name, address and email address, then you will get an email asking you to confirm. All you have to do then is click the link in that email and your vote will be registered.

When I get enough votes (and I need 100,000, so need all the help I can get) it will be debated in Parliament. Hopefully, it will be considered to be’s such a no brainer that the MPs will agree to it going ahead.

Please forward this to everyone you as it will improve the daily lives of so many sufferers beyond recognition.

Thanks in anticipation for your support.  By Hillary  Pengelly

image

Doctors visit… One year after Lymph Node Transfer

image

centennial Park Sydney

The true meaning of life is to plant trees, under whose shade you do not expect to sit. ~Nelson Henderson

On Friday it was my one year check up with the surgeon who did my Lymph Node Transfer. In fact it was exactly to the day, March 14th 2014, and what a year this has been!! The doctor was happy with my progress, we established by the ultrasound that two functioning nodes are present, maybe three, improvements in the leg seem to be inline with what is expected at this stage. These changes are not easy to measure, as it is more about the condition of the leg by the end of the day. What I have noticed in the last few weeks is the ankle remains the same as in the morning. Prior to the LNT my ankle would have puffed up by the end of the day, even in my compression stocking, especially if I had to sit with the leg down and not elevated. Sitting at a conference, working at my desk, sitting at the table, talking to clients, standing to long, these and more would all have led to swelling. I can now do all of these things with out the ankle and foot getting all puffy! This is a huge plus as it means the nodes are starting to work. However although my L-Dex reading is now 7.1 the actual measurements are similar to the morning I was measured pre surgery. These measurements have been lost, but I had some old ones, so can compare those. My leg was never very big, as I would not have been a candidate for this type of surgery. Had my leg been larger or more fibrous I would then have needed liposuction, or a mix of LNT and liposuction, as some have had. Decisions on the type of surgery required and suitability can only be made by the specialist plastic surgeons and depend on the condition of the limb and how much fibrous tissue is present. Surgery for me was also to reduce/stop the incidence of infections.

I am part of a research program, at Macquarie University hospital in Sydney, and doctors have realised that measurements alone are not giving a clear picture of the improvements in the limb. They do not show that the limb has softened, they do not show the difference over the course of the day. There is however a new machine arriving that measures “moisture” in the limb, with this they hope to be able to do some more accurate, before and after comparisons. It also needs noting that the Lymphasytagraph that I had at six months, showed the injected dye moving up to the pelvis 20 minutes faster than pre surgery. Therefore results are a mixture of different things, L-Dex, Lymphasytagraph, ultrasound, MRI, measurements and mine and the doctors observations. Over the next year it will be interesting to monitor on going progress as the nodes continue to grow.

My doctor has suggested that I do two weeks of Complex Bandaging and Manual Lymph drainage, which will entail a trip to the hospital everyday to the physio department. He has requested this to move fluid out of the knee and middle of the leg, as this is much slower to reduce. He feels this would give the new nodes a “boost” and help them to work more efficiently, once some of the more stubborn fluid is removed. After the surgery my knee blew up like a football, so this has been the slowest area to respond. My next visit to the doctor will be in three months time to see how the Complex bandaging has helped.. Is the knee swelling during the day and are the nodes coping better? At this stage I am still wearing a compression stocking 30-40mmg. This may need to be reduced to a smaller size after the bandaging…

What should be remembered is that every patient is different when it come to treatment of their Lymphoedema. Some will be suited to surgery and some not. Plastic surgeons, who specialise in this type of surgery, will assess each individual, decided on suitability and if they fit the criteria, what surgery would be best. I write this blog from my personal experience and that of others, but in no way does it replace a specialists assessment. Below are some links to information on various types of surgery for Lymphoedema.

http://ecancer.org/journal/letter/9-is-there-a-role-for-surgery-in-the-management-of-lymphoedema.php

http://stanfordhospital.org/cardiovascularhealth/lymphaticvenous/treatments/surgery.html

http://corinnebeckermd.wordpress.com/about/

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-topics/dealing-with-cancer-treatment/lymphedema/index.html

image

Copyright © 2013-2014 by Helensamia. All rights Reserved.

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks