Meeting with Dr. Becker next Friday

kriserts

I've been following the news on lymfactin, too.  I also did some googling around today about liposuction and lymphedema, and there's a study that will be finished in 2014. Since I'm in NYC, part of me REALLY wants to go see a doc, sign up for the node transfer, and throw my hat in the ring, see if it works. But there's some wisdom to what knarmita is saying. I've thought many times that I should just wait to see what happens with the lipo study, and the lymfactin study.

Anonymous

Not to be a negative Nellie here, but there is such a thing as neck LE. When my LE therapist was showing me a catalog for night garments, I saw all kinds of pads for face, head, neck LE. During Dr. Massey's presentation, she specifically talked about using the contralateral node, not neck node. I don't know if she is doing this now, and I hope anyone who attends her next conference asks her this question. 

Here are some links with info on neck LE. 

http://www.lymphnotes.com/article.php/id/378/

In this next link, scroll down to see articles related to LE after head and neck surgeries and the types of treatment: 

http://www.lymphedemapeople.com/thesite/lymphedema_of_the_neck.htm 

Also: 

http://www.cancer.net/patient/All+About+Cancer/Cancer.Net+Feature+Articles/Side+Effects/Head+and+Neck+Lymphedema%3A+Swelling+After+CanceReallr+Treatment

I'm not trying to dismiss hope, but rather bring to light the known risks of taking nodes from the neck. I am just as eager for an answer that will end our suffering.

cookiegal

kharimata...thank you for posting about the growth factor. I hope you are right about a cure!!!!

kcshreve

I was at Dr Massey's info workshop a few weeks ago and she is also using the neck.  She said that's a decent option as it as many ways to drain, so LE there is unlikely.  She did not say it couldn't happen.  She's pretty careful not to say that, since of course, anything can happen.  But she did agree with the concerns we've all had about using axillas for leg LE and abdominal/inguinal nodes for arm LE.  So, the neck gives us one more option.  Dr Massey's patients are all in a research group.

Nitocris

Hi,

Not to be too negative either, but harvesting from the neck would seem even more risky to me because the neck is the "collecting" point where all the lymph flows.  The cleansed lymph flows into the subclavians veins on either side of the neck. 3/4 of the total body lymph is drained on the left side.  What is the impact when lymph nodes are removed from that area?

These nodes  are the last "check point" (filtering) before the lymph is returned to the bloodstream.  Even though there are many nodes in this area, whenever you remove some of them, you create damage which in turn disturbs the flow.  

I don't know which is your LE side, but you also mentioned that the doctor checked your cercical nodes on the same side?  Leaves me a bit skeptical????

Even though I would give a lot to get rid of LE, presenting this option as "decent" is not good enough for me at present. 

Binney4

The growth factor issue is problematic. To date, the research on it has been done on mice tails, rabbit ears and pig parts. The result of these experiments is a chaotic overgrowth of lymph vessels and the proliferation of (benign) tumors (the animals involved were not cancer survivors). There is no way to control or regulate the growth of either vessels or tumors. Consider: in order for cancer tumors to grow, they must create not only blood vessels but lymph vessels. In fact, the depth of penetration of lymph vessel growth into a tumor has been proposed as a measure of the likelihood that the tumor will metastasize. In other words, introduction of lymphatic growth factor into an area that may contain stray cancer cells may produce ideal conditions for tumor growth.

Because of this risk--and the general state of lymphatic science that is unable to control or regulate the effects of the growth factor, much less predict its immediate or long-term effects--human experimentation with this growth factor is banned in the U.S. until much more is known about it. For that reason, the study mentioned here is being done in Finland, where the regulation of such things is much less stringent. And besides, that's where the company producing Lymfactin is headquartered. AND where medical care--and education about LE care--is in the hands of the government, which would potentially benefit from promoting Lymfactin. Too many conflicts of interest here, and way too many unanswered questions.

At any rate, the growth factor study is currently in Phase I, which is not a test of the growth factor itself, but of the chemical (the "medium") they're proposing to deliver the growth factor once they determine if the medium itself is safe. There are top researchers in the U.S. who argue that the medium is one that causes an allergic reaction in a large percentage of patients, so Phase I will determine if even that much is feasible.

So we wait. For lymphatic science to catch up with our need for accurate information, and for those who stand to profit from our condition to get their priorities in order.

Be well,
Binney 

Nitocris

Hi,

Apparently a clinical study is supposed to start in late 2012, but there is hardly any information about it here or it is restricted to "professional circles". 

In September, the 5th Nordic Congress of Lymphology will take place in Oslo and a presentation will be made by a member of Professor Kari Alitalo's team (Molecular Cancer Biology Program)  about "Advances in research on lymph angiogenesis".  Unfortunately, this congress is for professionals only..... we are the first concerned and yet no information is disclosed!

PinkHeart

Probably a stupid question . . . but my breast cancer spread to my lymph nodes in my axilla.  I now have chest wall/truncal LE.

For head/neck cancer patients, can their cancer spread to the lymph nodes in their neck?  And if it does and those nodes are all removed, doe the get LE or are they at risk for LE in their neck? 

Binney4

PinkHeart, that's not a stupid question at all, it's an important one. The answer is yes, definitely. Head and neck cancer has a very high risk of lymphedema in the face and neck. Any damage to the neck nodes would carry some risk, though whether a surgeon would know whether their patients developed it is questionable. It would depend on who the patient saw about the swelling, which might well not be the surgeon (especially since the surgeon couldn't do anything about it). One thing to be aware of with head/neck LE risk is that the swelling can be internal as well as external, in the mouth and epiglottis, interfering with swallowing, eating and talking--sometimes even with breathing.

The results of a recent study of LE following treatment for head/neck cancer showed a rate of around 75% who developed some form of it, either external or internal or both:
Prevalence of secondary lymphedema in patients with head and neck cancer:
http://www.ncbi.nlm.nih.gov/pubmed/21802897
Considering such statistics, and the devastation of a head/neck LE diagnosis, you have to wonder why these surgeons are so willing to dismiss the risk.

It's treatable by CDT, just like arm and truncal is, but not every LE therapist has experience with head/neck LE and obviously it would be helpful to find one who does. There are both day and night garments available for head and neck LE. Here, for instance, are some nighttime neck and face swelling solutions:
http://www.jovipak.com/head.html

Hope that helps. Be well,
Binney

Anonymous

Thanks, Binney, for mentioning the issues surrounding lymfactin. I started to post some of what you said, but not as clearly. I was concerned I might get something wrong and deleted. I was fortunate someone passed this info along to me, but you appear to have even more current data. :-)

Anonymous

KC - Thanks for confirming Dr. Massey is using the neck now. It's not how she presented it when I saw her in DC, and I'm pretty sure I was awake for the whole program! Now I am kind of disappointed, or, I should say, concerned. The articles I saw about neck LE make it seem a more tortuous form of LE than others . . not that any LE is good.

PinkHeart

I had session with my PT-CLT today, and she said YES!!! there is such a thing as neck lympedema and has seen it!

I can't help but want to have hope for my LE like others.  Mine is in radiated side of chest wall and side under axilla.  I also just lost a breast implant that extruded through radiated skin and had to be surgically removed.  PT can't do scar release on it because my skin in paper thin.  PT cannot move fluid away because I have so many huge roadblocks of rock hard chunks of scar tissue in all quadrants of my breast as well as all the way across the entire area where my IMF used to be, and the huge hunk of axilla cord in armpit make its difficult to move past that . . .

If I ever go through node transfer, I would prefer groin, the neck sounds riskier IMO.

Anonymous

I wonder if they'll ever be able to have node donors they way we have organ donors? Then they're not taking nodes away but just adding.

foreverhopeful

Hello,

I just got some clarification about the lymph node transfer in the neck that I had done.  Neck lymphedema typically would only occur with extreme treatment to the neck - radical dissection - radiation.  They do feel the risk is small with the small amount of lymph nodes that they borrow.  It is like someone mentioned about Dr. Massey saying that it is unlikely, but you never want to say never.

Happy Trisha - the scar is about 2 inches and is right where you might wear a necklace.

foreverhopeful

Hello again,

Does anyone know any preventitive measures for neck lymphedema?  Exercise or not exercise?  Yoga?  Just like we avoid blood pressure, massages, etc., for our arms.

I can't help to add that I am really mad at myself for being so trusting.  I feel a bit like a fool:(

Anonymous

foreverhopeful- You are not a fool.  All we can do is trust our doctors will tell us the truth, be up on the latest research and always do what is best for us 100% of the time.  Unfortunately, this doesn't always happen.  Hopefully, nothing will come of it but I think you're smart for wanting to educate yourself about neck LE.  I'm sure Binney or Kira will come along and advice or you can post your question on the most active LE thread- "GRRRRRRRRR I HATE LE.............".  

http://community.breastcancer.org/forum/64/topic/759378?page=145#idx_4342 

Binney4

Foreverhopeful, NOT a fool! Not even close. We all do the best we can with the information we have. Pat yourself on the back for your courage and for getting through yet another surgery. We're all joining you in being "forever hopeful" about this. (It's a great screen name, and you might as well claim it for this as well!). The study I cited above is for head/neck cancer patients, which is what PinkHeart asked about, and that's not a category you fall into. There aren't any studies about head/neck LE from VLNT using the neck as a donor site because it's a brand new procedure and there hasn't been any follow-up, but certainly your surgery was nowhere near as extensive as would be needed to treat head/neck cancer.

As for risk reduction techniques, I don't know what they'd be, except that I suspect a bit of daily face and neck self-mld would be prophylactic. There are instructions on-line, but this is not a do-it-yourself situation, so do find a LE therapist with head-and-neck experience (if yours is not already experienced) and ask for an appointment to discuss risk reduction and to learn a personalized mld routine. Here's how to find LE therapists near you that you can call and ask about their experience:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Here's the good news: the facial/neck mld routine is incredibly relaxing and delicious. Done slowly at bedtime it'll put you into a charmed and relaxed sleep. Ahhhh! 

Please don't waste any energy beating yourself up--you don't deserve it and it sure doesn't help. Go for joy instead. Gentle hugs,
Binney

kcshreve

Forever - you probably went to the top team in the US for your procedure - what more can you do?  I had Sullivan and Trahan for my diep.  They did a great job, but were not all that great at offering info - men!  If you have questions, Dr Massey is quite willing to chat it up.  She often teams with Sullivan, so she knows how they all work. I cannot remember all the details, but when I heard her describing how they determined to start using the neck, there were several reasons.  She is tracking all her patients, and I imagine Sullivan probably is, too, since they realize they are collecting research for the future.  She said so far they've had no problems with LE as a result of their procedures. Granted, they've not done thousands yet. Dr Massey seems pretty open, and even shows some of her early (not good) plastic surgery results as she was learning different techniques.  She clearly got way better as she practiced.  I may have it really wrong with her, but she seems straightforward to me.  She always has an open offer to consult.  Maybe you could call her?

kcshreve

Forever - were you not given after-care protocol?  After a mx, we are now told not to lift our arms above shoulder height for at least 6 weeks in order to let area repair.  I imagine there would be some kind of guidelines related to your scar, no?

HappyTrisha

Wowee, I don't check this thread for a bit and there are a ton of posts!

 kharimata, I will definitely check out that site you mentioned!  And thank you for the information.  I had never heard of that, and it sounds fantastic.  Can you imagine 80% more than with LNT?  And yes, I can certainly afford to wait.  The woman I saw when I was at Dr. Vasile's office had primary LE in both legs.  I know she was having her surgery last week.  I am going to make an attempt to contact her, and  I will definitely update on her progress.  If there's great progress, maybe you might want to check it out!  By the way, your English was perfect. 

***********

kate33, you know that's a good a question.  I had heard the same thing about compression garments but when I asked Dr. Becker about it she said no because it would compress the lymph nodes and fluid even more and that's the last thing they want to do.  Now I don't know if she meant just immediately after surgery or if she was also talking about down the road.  I think it was one of those things that was down on my list of questions so I didn't really puruse it.  I had gotten up at 5 a.m. to take the train and hadn't slept much the night before (probably the anticipation) so by the time I got to the City and to my appointment, I was pretty loopy!  Maybe I would have been much more probing about a lot more things if my appointment was at 4 in the afternoon, ha ha.

***************

kriserts, you know going for a consult is just that.  You certainly don't have to sign up for the procedure.  Gee, being right in NY would make it so convenient to do that.  Just to satisfy yourself.  But I agree that the lymfactin stuff sounds so promising.  Again, I can't wait to read it - which I am going to do as soon as I'm done posting.

****************

Tina, I don't think you're being a negative nellie at all.  Heck I think we should bring all the information we can to this forum.  I tend to probably be more brave than the average bear (or more stupid?) so I am willing to try things that are not "perfected" in other peoples' eyes.  I personally am impressed enough with Dr. Becker's experience that possibilities of things that are not a huge part of her experience would not keep me away.  But that's just me.  I am still waiting for katiejane to put me in touch with her friend who supposedly had a problem with LE elsewhere.  If I never get to comunicate with the person, I certainly am not going to assume it to be fact, when I had heard the opposite from Drs. Vasile and Becker.  Also, I still don't know if the person, if she did indeed develop LE elsewhere, ever told the Drs. about it.  I am an attorney.  Heresay is not admissable in my courtroom, ha ha.

****************

nicotris, I don't blame you for being skeptical.  You are mentioning things that are physiologically oriented.  But talking to a doctor who has done this for 20 years really trumps all of that for me.  I am sure you can understand that.  There is risk involved with just about everything.  I probably wouldn't consider removal of nodes in the neck a "decent option" had I not been to see these doctors and had I just read this thread and peoples' opinions.  But that's just me.  Talking to Dr. Becker allayed a lot of my fears.  Again, whether anyone else trusts what she says or does not is of little moment to me.  We all have to make our own decisions and I would never encourage someone to go full speed ahead based on my impression of Dr. Becker!  I can only tell you that my trust in Dr. Becker was totally solidified after meeting with her.

****************

Binney, thank you for the information on growth factor.  I will still take the time to read it, but with a little less enthusiasm. I guess I misunderstood.  I thought the study was being done at the University of Pittsburgh!

************

foreverhope, thanks for the information on the scar. Dr. Becker was pretty matter-of-factly when she talked about the neck nodes, and the thing Dr. Vasile kept emphasiszing was the scar!  So when Dr. Becker would talk about it, Dr. Vasile would follow up by saying (paraphrase) "Realize you will have a scar on your neck.  Is that okay with you."  A scar on my neck wouldn't bother me in the least.  Again, I am figuring that Dr. Becker has done this successfully without any neck LE.  I didn't ask specifically whether you can get neck LE.  But since they said they hadn't any cases of LE, I guess I figured that was part of it.  Again, not that it isn't possible, just that it hadn't happened (yet?) on their watch.

************

I will now go and read up on Lymfactin!

HappyTrisha

So if I'm understanding it correctly, this lymfactin study still involves nodal transplant.  It's just what's done with the nodal flap before it's transferred that is different.

Hmmmmm.

BeckySharp

My therapist is going to the NLN conference in Sept.--She is attending a session on Advanced Management: The Complex Patient with Head and Neck Lymphedema.  Presenters are Brad Smith, Sheila Ridner and Jie Deng.  She says she is getting more and more patients with head and neck LE and needs to learn more about treating it. 

kcshreve

My LE therapist has neck LE herself as a result of a breast reduction surgery.  Anything is possible. There can be LE anywhere the body takes an insult.  When I listened to the description of this neck/node transfer, it sounded like they are very aware of this potential and proceed slowly and carefully in order to create the least amount of trauma.  Still, anything is possible even though remote

HappyTrisha

Still hoping to hear from Katiejane's friend...   

kharimata

Hai,

happy trisha! I am very much interested in the results of that girl with primary lymphedema. So it would be nice if you could post it.

Binney4, thank you for the information. Off course when money is involved, I can imagine that people are not giving accurate information. What I have heard is that in fact in Europe there is a collaboration of many university's,... who are working together on the lympedema problem. (some do the genetic testing of family's with this, other do testing on these different growth factors,...).

I have send some emails to try to get some information, especially because I am very much thinking of doing surgery for my problem. But some (different and from different countries) said, that if i could manage a bit with conservative therapy, they advice me to wait to do anything. Because they believe that the sollution will be in this growth factor. So in a way I believe this, because different doctors told me this. I also think they wouldn't advice me to wait , if they are thinking it will only be a sollution in 20 years...

Anyway I am really hoping for this...they can make your bones grow faster, or slow the proces down... I can imagine that in time they will find something that makes your lymph vessels grow (or at least rebuild what is broken)...The thing is that now with all the cancer there are many more people with lymphedema so the need for a sollution is now higher then before... For the 'few' people like me with the primary case... I think there wasn't really a priority ...So in a way the medical industry is about money, but on the other side I believe when there is a bigger market they are more engaged to find a sollution. (sounds a bit bad, didn't want to put it like this but unfortunately it is the reality i guess...)

 Do find all the posts very interesting here in this topic! 

TopBillings

Hi All

I am compelled to start writing as much as I possibly can about the Lymph Nodes Xfer procedure. I had the procedure done by Dr Becker on July 3rd  in NYC and am at home recovering. I have a had prettty good results for 3 weeks. I was sick and tired of physical therapy and the compression garments and could not believe that there was no information or remedy for this from the medical community. Since the surgery I have had no swelling in my hand- NONE. I am slowly working on my arm with wrapping and therapy as I have been told for the next 6 months I will need to do this to stimulate my lymphatic system..

As for coverage - B/C B/S Anthem did cover my procedure - I was told that I was a first to be considered and covered and what pushed the over was the size of my arm almost doubled in comparison to the other..

I am almost sure multiple procedure can be done with the lymph node transfer so if you are considering reconstruction I am almost sure it can be done- but the doctor could best answer that questions..

If there are any questions please ask--- 

Anonymous

TopBillings- Thanks for sharing your story.  I have been researching this procedure with interest.  I currently have UnitedHealthcare but my DH is now on disability so the company is transferring us to B/C B/S within the year so it's good to know they are starting to cover it.  My only concern would be I don't have a lot of swelling, though I'm bilateral so it's hard to compare arms, but I do have a lot of pain.  Not sure if they would consider me a good candidate or not.  Do you mind if I ask where they took the nodes from to transfer?

HappyTrisha

Wow, Top Billings!  That was the same time that I was in NY for my consult!  I would love to know more about it too.  (I wonder if you're the reason I never got my MRI, ha ha!)  Is there any way you would share your story with us.  I almost am considering what's happening to me right now an omen, but my arm has been very puffy lately and it never gets this way.  I guess it could be because of the heat, but even when I stick a sleeve on, it seems hard to get it down.  So I really am thinking hard about setting up an appointment to have it done.

I would love to know everything, of course, from how long you were in surgery to how long your recovery was, whether it was at all uncomfortable, including any pain in the site from which they took the nodes (I'm interested in knowing where they took the nodes from also!) etc.  If you'd feel more comfortable doing it in a PM, I'm more than happy to PM you.

This is very exciting!

Kate - my swelling is extremely mild and United Health said they would cover it.  Dr. Vasile's office did all of the paperwork so they apparently know what to say to get it covered.  You might want to look into this before your company switches over the BC. 

Anonymous

HappyTrisha- Thanks for the heads up about UHC.  My arm and back have been very puffy as well.  This is the worst time of year in AZ with the heat and now the humidity from our monsoons but I've been very careful.  Might be enough to prod me to do something, too.  

HappyTrisha

I made an appointment today to go back to NY and have the MRI.  I would say that means I have made my decision.  I'm going ahead with the surgery.