Meeting with Dr. Becker next Friday

natalie2610

hi

it's been 2 months after my surgery with Dr Becker- and I am doing great , just got back to sports which I have missed very much.   about my operated leg , too soon to tell , since it is winter around here and I have been taking really good care of it , it looks good in general . though I don't think its because of the surgery , the transplanted lymph nodes haven't kicked in yet since it is too premature...but hopefully soon I will see a  difference , when that happens , I will share it with u all

PinkHeart

Natalie~

Thanks for sharing your experience so far.  When is your follow up with Dr. Becker?

I'm pretty much with you on everything you said only I am just one month out from LNT surgery (and Stage 2 SGAP).  This summer I plan to be OUTSIDE as much as possible doing many activities I love to do.  That for me is when time will tell - at least six months.  I also have two more natural breast recon surgeries to go through, just don't know when I'll schedule them due to budget for travel, and job interviews....

natalie2610

hey Pink Heart

'Mazal Tov'  to u too on having the operation , I know its along journey for u , and I wish u luck with the rest .

I will meet Dr Becker on the first week of April in Paris for a checkup , it will be 6 months after my surgery , there I will have an MRL- Lymphography to see how much new lymph vessel's have grown from the transplanted lymph nodes that were put in my thigh ,  about the donor site - my axilla ,  also no problems that appear to the eye,

I put my faith in god's hands and sure that this procedure will have its benefit

hugz4u

Congrats Natalie, sounds like it was succesful.

kharimata

hey everyone

next week I am off to Paris again, to have the MRI done and to see Dr. Becker. I am very curious what the test will say. Just had some kind of infection on the LE leg, on antibiotics and off course my leg is more swollen again... That was it for the good work of keeping it good, one infection and I can start all over again.

Can't wait to see doctor Becker and having my questions answered...

HappyTrisha

kharimata, keep us posted!  I hope all goes well with the MRI.

kharimata

Thanks Happy Trisha, 

I will keep an update. Personally I am not very keen on the MRI, since two years ago I was stuck once in a cold store (hope this is the correct English word)... and since them I am very claustrophobic hahah...

Nordy

Kharimata-- do you mean a cold storage? Like a freezer?!



Well... I still stand on the fence. I have seen three docs that do microsurgery for lymphedema and they are have various opinions. Actually I have had the opinion of four surgeons. The consensus of three of them is that my lymphedema is not severe enough to do surgery. Having said that, let me just state that I am type A about my arm. I wrap nightly, I wear my sleeve daily, I try to eat right, I defintely exercise... All the things I am supposed to do. AND somehow I have managed to shrink my arm by 1-2 cm (was it the Ketoprofen, essential oils, exercise, wrapping, self massage???) over the last two years, however, it is still 2-4 cm larger than my uninvolved arm. if I am without my sleeve for any length of time over 20-30 minutes, my arm starts to ache and swell! It is a constant battle. I am going for one more consult next month, but I am thinking I am going to live with this. My greatest fear is a donor site lymphedema and if I couldn't fit into my ski boots it would be the end of me. As it is, I always have boot indents after skiing all day (lymphoscintigraphy was completely normal for both lower extremities). Maybe in a weird twist, being denied surgery by the surgeons was really the answer to my prayers that I did not really want to hear. Maybe in my lifetime someone will grow some from stem cells in a petri dish and be able to just inject them into the axilla! Fingers crossed! As for you ladies, please keep posting. I am constantly sending you positive energy, vibes, good karma, wishes, prayers and anything else positive that I can conjure up! (((((Hugs all around!))))))

PinkHeart

Nordy,

Sorry about not getting the help you were hoping for.



Did the three surgeons say just how bad your arm needed to be in size or what stage of LE? How about lone surgeon willing to do it?



A recent article by Dr Becker stated that LNT transfer had better results for patients with very minimally advanced LE. This was reported by Carol57 on another LE thread. Hope I have her member name correct. She should know name of med journal with article.

Nordy

Pink--that has always been my understanding from Dr. Becker's answers to questions on that website -- that early stage lymphedema does better. My lymphedema is stage 1-2. But the longer one has it, the more prone to tissue fibrosis and other long term effects. The doc I saw that was pro surgery trained with Dr. Becker also. So we shall see... Thank you for being so supportive!

Nordy

Also, this time I am dragging my husband with me! He did not go to the other three consults!

PinkHeart

Kharimati,

Good wishes to you next week at your appointment.



Here in the U.S. the nurse will ask if you need xanax to relax while in the machine. If it is a short scan like only 30 minutes, I go without.



I recently had HBOT-hyperbaric oxygen therapy as treatment for severe radiation damage to chest wall and tissue. I had to lay inside a small chamber for 1 & 1/2 hours everyday for a month. So I'm getting used to the sardine (claustrophobic) experience.



Please keep us posted and enjoy your trip to Paris.

PinkHeart

Can someone please provide the link to Dr. Becker's web site? Having trouble finding it for some reason.

Thanks!

PinkHeart

Nordy,

Do you have another consult coming up? You mentioned bringing your DH along.



Have you considered recording your consults? (with doc's knowledge). A good friend of mine with ovarian cancer has another friend (a lawyer) go with her to appointments and they are recorded. My friend is divorced and especially during her sick phase she had trouble remembering and had a few docs rushing and backpedaling, etc. Lawyer friend (tax & estate) is very sweet and level headed about presenting the recorder and docs have been okay with it!

kharimata

Nordy.. It was a cold storage .... I had the mri done and it is not bad at all...30 min and that is it...the communication was funny cus it was in french...and that is too long ago . But because i did my best everybody was really nice. What do you mean with 'boot indents''? And why did you have lymfescintography off your legs?

I think it is strange that 3docs say it is not bad enough, to me it sounds quite hard to keep it under control. I think they do lnt for less severe cases.

I wonder what doctor Becker will say about my case. As i undrstood the conclusion of the mri, mine is moderate in one and slightly not working in the other...but well maybe my french is not that good..see what the doctor says tomorrow...

kharimata

Hai everybody.



Back from paris....

First: some people say the irm is new and that it is not prooved yet that it is actually mapping and showing the lymphatic system.

I went thete for this test. They gave me a 'pijama ' with long trousers and i went to a cabin.they did not see my legs at any point. But the conclusion of the test was a very accurate description of my problem....so i believe the test ,how else would they have known this?



It is much better then the lymphescintography...there they injected something in my toes and in both legs it stayed black - except for the feet where all the fluid stayed -. They then concluded , almost in panic, that i have a huuuuuge problem (first they thought the scannet was broke)... And that they have not seen this a lot with someone who did not have cancer.



After that test - and there conclusion- i really had panic attacks, thinking of what my future will look like.





The mri showed that the biggest problem is in both my lower legs half way the calf... But i do have some vessels remaining up fron there....logic that lymphescintography was no good test for me...

Also in my right leg femoral side i have lacking vessels. But i do have nodes in both legs.





Dr. Becker told me she could help me, taking l nodes from region next to breast - not axilla- and he would place them halfway the calf. She said it is only one night in the hospital.

40procent has total relief off symptons, the rest shows improvement.

I had the feeling that she was quite positive about the outcome since mine is not that severe, and i am still young.

She did not tell me it is experimental, has some risks,... She was relaxed and sticked to the point, no bla bla , big promises or lots of talks.

She told me that she operated a women the day before that came from my country. She did surgery 12 years ago on on of her legs. She had 3 pregnancies in the mean time - normally this makes it much worse-. Twelve years later it suddenly came in her other leg so she came back to her for having the other leg done...



She seems to me like a very modest person, her office is really basic, no fancy stuff or high tech, writing everything by hand like in the old days. :-)

What i like is that she started with this a long time ago, when there were less cases of le - more the rare cases like mine-. Now with the treatment of cancer where they remove the nodes, le treatment or trying to find one , is the big money. Allthough now they are interested in lnt all over the world, she is still very modest and not in for it for the money.. I must say it is fascinating.



I brought my boyfriend with me, and i am happy for that. It is so good to go with somebody, recording it is also an option but body language is so important.



I am goin to find some way to get it payed back and them i will be going to paris again... I must take a decision, time will say what was the best but then it will not b the time for me anymore. When i am having it done i want it to be done by her.



That was it, wanted to share with you my thoughts..

I wish you all the best with making your decision. Off course it is frightning but the thought of living with this and the knowledge that for sure this will only get worse when i dont do something is frightning me even more....

kharimata

I forgot to say that what i liked about Dr.Becker too is the fact that she didn't want to do surgery on both legs. She said the other legs still has some vessels and that with more drainage it will be ok. So it is totally not that she i promoting it. She did say really strong that i must never do liposuction cus then they will suck out everyting even the good stuff. Saying that i had to live with that tiny bit of fat -going to stay there - because the lack of vessels.... I guess i am ok with that :-)

kharimata

http://talkabouthealth.com/what-is-the-risk-of-lymphedema-at-the-donor-site-after-having-a-lymph-node-transfer-and-what-can-be-done-to-reduce-the-risk

kriserts

Kharmiata, what did she mean, you can never have liposuction? did she mean no liposuction on your legs to try to relieve the lymphedema? Or liposuction from wherever you want to take the healthy vessels?

kharimata

Well i have primary le in both legs. After my injury it worsened a lot in one leg - mostly lower leg. I started to notice a difference in my upper leg too, compared to the better leg. I thought it was water too, but i asked dr. Becker why there the mri did not show water. She answered that it was fat, that was more difficult to go away cus of the fact that there were less vessels in that area...

Maybe with exercise or local intense drainage i could help it disappear, maybe not. But if i would have liposuction to remove that fat, i would take out all the remaining vessels, leaving me with a bigger problem. I guess lipo is dangerous for lots off people. I read several stories from healthy people who got le just cus off liposuction that was too aggresive...



Now i start to think that my bad leg is not getting bigger, but that my good leg is getting smaller ;-) cus off all tje drainage and swimming i have been doin to control my bad leg.... But that here the fat is staying cus lacking vessels.





Aparently on 6 march the lymphatic research netwerk will organise a symposium on the results on lymphatic surgery. The symposium can be watched live-stream and will be available afterwords. It is the work from dr. Dayan that will be presented and you can find more info on there.facebook page ( lymphatic research program).....

kriserts

Thanks for the reply. I live in NYC so I hope to go in person to hear Dr. Dayan speak.

PinkHeart

Hi,

I have a question regarding the Step Up, Speak Out lymphedema web site.   (SUSO)

I have had severe AWS-axillary web syndrome/cording since a few weeks out from my 7.5 hour BMX, ALND (19 nodes removed) surgery, and immediately followed by a 2.5 hour breast reconstruction with direct implants (that have since failed), for a total of a 10 hour unusually long surgery.  I started PT 3 weeks post op (needed to wait until 6 drains were out), then radiation started 8 weeks post op (had to wait until PT could get my arm to lift back far enough over head for beam to target breast.)  Everyone was clueless and never mentioned AWS -- except the PT-CLT.  Don't have to stand on my LE soapbox here, because you all know that many breast surgeons, plastic surgeons and radiation oncologists are clueless about or understand the seriousness and prevalence of LE --  let alone its bitchy friend AWS-Axillary Web Syndrome.

I haven't reviewed the SUSO site for about a year, and just went there again today.  I noticed in the Highlights column on the left that the following statement is now in bold letters:  "... have concluded that axillary web syndrome is a risk factor for lymphedema."  Further down, #3 states "Cording is associated with the risk or development of lymphedema."  (maybe it's always been there but I missed.)

Do you know of any additional studies or journal articles that are more recent that you could direct me to relating to this (personally experienced) fact about AWS and LE? 

Have any of your surgeons, rad oncs, etc. made these same statements about correlation between AWS and LE? 

Perhaps Dr. Corrine Becker or her surgeons that have trained with her? 

Also any new articles stating that whether cording is just scarring, or is lymphatic scarring?

I'm going to copy this and post on a few other threads.  Thanks everyone, I appreciate your feedback and experiences!

Here is link to SUSO, to the AWS page: 

http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

kriserts

Did you all see Dr. Dayan's presentation last night on lymph node transplants? You can watch it at Livestream:

http://new.livestream.com/accounts/1639192

I was really impressed with all the testing they do before surgery to pinpoint the nodes that drain a particular part of the body, before they excise and move them.

kharimata

i saw it and i was very impressed and happy.

the way the lecture was given, open and no-nonsense and in a way even i with my level of english could understand it ;-)

i was impressed by the dedication of screaning and follow up so that it can serve as a real study and making sure every surgery will at least help the research...

also fi-nal-ly oncologist, surgeons and physicians are connecting their dedication to get to understand this major problem..10 million patients in the us?

in my country there was absolutely no repport what so ever on the tv about le on 6 march...

that is really getting on my nerves: the relevance is too big to neglect it like the media does. at least people would not feel like they are alone and others would maybe more know the disease so i would not have to explain it every time....



but well, at least after watching the livestream i feel like there are people combining there dedication...one year ago there was almost nothing to find on lnt. and now....i have the impression that everybody is waking up.... and that is very hopefull for the future...just what i need!!!/p>

HappyTrisha

Unfortunately I kept getting a "No Signal" signal intermittently so finally stopped watching it.  I'm hoping it's something to do with the storm, thought I don't see why it would be since it's archived materials.

kharimata

I had it too... you just need to ignore that ... sometimes it is good, and sometimes 'lost signal' pops up... but the sound stays... but it is worth it!

PinkHeart

kriserts,

Thanks very much for posting this presentation!  I also had trouble with viewing it, and hearing some of the speakers, but kept on because I really wanted to know what's happening.  The slides were blurry, too -- wish they were available somehow.  So glad to see more doctors having an interest in learning more about LE and improving the quality of life for LE patients. 

Also, liked that they discussed patients with all levels of LE, and even that someone with mild swelling (or none visible) can be deeply affected by LE physically, emotionally, and financially.

So far so good for me since LNT surgery, but realistically, I have done basically nothing the last three months except hibernate from cold weather, and baby my arm.   I do see PT-CLT therapist twice a week.  She does a mix of massage, scar release, work on axilla cording, and ROM in my unstable shoulder.  I'm really looking forward to being outside in hot weather and gardening and doing everything I did before breast cancer and then LE Dx.  It might warm up enough this weekend to melt snow and do some garden clean up.  Promised my PT I would not touch a shovel or rake. 

I have 3rd breast recon surgery relating to my bilateral SGAP surgery coming up in three weeks.  Surgeon said a therapist is going to wrap my arm before surgery.  This time they will work on my radiated breast, as well as a lot of fat grafting to both breasts and scar revision.  Also going to try to resolve a neuroma. 

A tiny bit nervous as most of the work involves my right side - LE side, but do have a highly experience surgeon that I trust.  Will only be a four hour surgery this time, and only one drain.  It will be considered 23 hour out-patient but will be in a private hospital room. 

I am 3 months post-op from lymph node transfer done December 14, 2012.  My surgeon won't be doing any imaging this time.  I think he said at six months? 

HappyTrisha

Hmmm.  One of the problems with my MRI was that they couldn't be sure about the vessels due to surgeries I had in the past and wouldn't know until they cut me open.  I'm wondering if this could be of help: 

http://www.cancercompass.com/cancer-news/article/43920.htm?c=NL20130313

Although it only refers to lymph node mapping, I wonder if the vessels show up too?  I also wonder if this means that people don't have to travel to NY or Paris to have the special MRIs anymore?  That would be fantastic because then it could be done locally with the results sent to your doctor of choice!

I'm definitely going to check with Dr. Vasile on this because I would definitely be willing to have another MRI and have the results sent if it meant that they could know definitively whether the vessels were okay, meaning that I wouldn't have to risk being cut open only to find they couldn't go through with the procedure!

(Here's a general question though.  Why would they want lymph node mapping if it has nothing to do with cancer itself?  Do you think it's entirely for the lymph node transfer surgery?  If so this is a huge step forward for LE, when the FDA gets involved!)

kharimata

http://lymphnodetransplant.wordpress.com/about-me/comment-page-1/#comment-173

a blog on this topic... 

kate727

Hi, I am fairly new to this board. I had my lymph node trsf on Feb. 20, 2013 in Chicago with Dr. Massey. She used a flap from my neck to my Lt. axilla. I have lt. arm LE. All went well. She had me remain in Chicago for 1 week for daily massage and wrapping with her therapist. Then she is wanting me to continue therapy still at home every day, which so far I have done. She said she wants me to be wrapped 23 out of 24 hours for 12 weeks!

Just wondering if anyone else's suegeon wants such intensive therapy after surgery and also how soon does your surgeon say you would see results? Thanks!!