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sharona714 08-12-2008 05:52 PM

lymphedema concerns
 
Hi everyone,
I am new to this board. I finished chemo and rads in October and now notice swelling. My Dr. says this "may" be lymphedema but I am going to see a specialist to see if I can get a definite dx. I am so scared of this condition. I am 34 and have 2 small children to look after. This will definitely make everything harder on me. To top it off, all I have seen or read about this is just awful. Does anyone have lymphedema who can offer some comfort and assure me it is NOT as bad as it seems. I keep thinking the worst and that I will not be able to control it and will be disfigured for the rest of my life. I used to be a model so for someone who relied on my looks for a good part of my life to get by, this is especially hard for me. If anyone can share their experience(s) with this, I would be so grateful.
Thank you,
Sharon

leea1206 08-17-2008 10:54 PM

Re: lymphedema concerns
 
Hi Sharon,

I don't have lymphedema, but am a survivor, and attended a class on lymphedema. The nurse said, if it is treated early, it can be controlled, so it is good you are seeing a specialist.

My brother was concerned about this as well, as he is 7yrs out from a melanoma dx and had many lymph nodes removed. He wrapped his arm every day for the 1st 2yrs after diagnosis, but now rarely worries about it. He only wraps his arm now, when he flys, as the changes in air pressure can cause a flare-up in those prone to lymphedema.

Leea

sharona714 08-19-2008 08:44 AM

Re: lymphedema concerns
 
Hi Leea,
Thank you for getting back to me. Does your brother actually have LE? If he does, it is soooo good to know that he rarely worries about it and only wraps when he flies. Does he wear compression garments during the day? Does his swelling come and go? Sorry for all the questions but if you can get back to me with more info, I would appreciate it
Sharon

Laura B 08-19-2008 12:27 PM

Re: lymphedema concerns
 
All I know about lymphedema is that you never should have blood taken or blood pressure taken from the arm where you had the lymphnodes removed. I'm sure your doctor probably also told you.

Hoopa7p 09-21-2010 03:52 PM

Re: lymphedema concerns
 
[QUOTE=sharona714;3694956]Hi Leea,
Thank you for getting back to me. Does your brother actually have LE? If he does, it is soooo good to know that he rarely worries about it and only wraps when he flies. Does he wear compression garments during the day? Does his swelling come and go? Sorry for all the questions but if you can get back to me with more info, I would appreciate it
Sharon[/QUOTE]

I have it also. If you are diagnosed with lymphedema, you should ask your doctor to send you to a lymphedema massage therapist. This is usually a physical therapist that is trained in lymphedema massage. They will do massage therapy on you and teach you the techniques so that you can do that at home to yourself. In the meantime, stay away from salt, carbonated sodas (especially non diet sodas) and drink as much water as you can during the day. Even though this is not a water accumulation problem, drinking water does help keep the swelling down.

pinkone338 01-24-2011 08:11 AM

Re: lymphedema concerns
 
Hi-I DO have lymphedema (as of 8/09) that was diagnosed 6 years after breast cancer surgery. The first year after diagnosis is crucial as you must keep up with the appts. with the specially trained physical therapist and the wrapping and the wearing of the compression garments. DO NOT go without a glove---wearing just a sleeve may just set you up to push everything into your hands eventually (speaking from experience.) DO NOT try to get away with a gauntlet.....that will still push everything to fingers. I still wear compression daily, do self massage, and avoid heat. Summers are a real bummer.....just try to stay as cool as possible. If I know that I'm going to be outside and it's really hot, I keep wetting my sleeve and glove with water to keep cool. It feels like everything "stabilized and settled down" around the 1-year mark. I think that's when the fliuds fianally figure out all of their favorite hiding places! Don't forget to exercise too. If you like to walk, DO NOT let your arm swing straight down.....keep your elbow bent at 90 degrees to keep the fluids from pooling into hand and lower arm. There is hope.....I have recently been diagnosed with another chronic disease that makes the lymphedema seem like nothing now.

GretchenS 08-18-2011 09:50 PM

Re: lymphedema concerns
 
I know you posted a while ago but I am curious about any updates. I have recently been diagnosed with lymphedema after lymph node removal related to breast cancer. I knew immediately what it was and started seeing a specialist immediately and am now set up with compression garments and do self massage every day. Knowing that this is a forever thing is so depressing. I have seen there are advancements in a couple surgeries-one involves a node transplant, and the other involves re-routing lymphatic fluid into a vein. But I am looking to see if anyone ever gets any relief with with traditional methods of treatment. Mine has not gotten any better since treatment started this past May. Thank you.

sharona714 08-19-2011 06:54 AM

Re: lymphedema concerns
 
Hi Gretchen,
I am so sorry you are going through this. It does suck, but please rest assured knowing there are new advances in treatment options popping up everyday. I like you, knew what it was right away and was devasted. I was alwayst the kind of person that excersised and ate right and took pride in how I looked so to have this happen to my leg was unbearable. It's been over 3 years and I can deal with pretty well most of the time but I do break down every now and then. I just try to always think this is NOT forever-not for me anyway :). I know there is a cure on the horizon and just that fact that there are several surgical options is a step up from where this was 5 years ago. I am exploring surgical options myself and am seriously considering going to see a Dr. in Sweden who has had much success in reducing and even eliminating lymphedema by a type of liposuction. My LE Dr and therapist gave me his info and said he is very good at this. His name is Dr. Brorson and he is in Malmo, Sweden (if you want to search him online) There is also a Dr. Levine in NYC who does another type of surgery for LE, and another Dr. in TX (I forgot his name) but you see, it is happening. Don't give up hope. The only problem for me now is the cost, as insurance does not pay, but I hope in time that will change since this condition CLEARLY is more than just a "cosmetic" burden.
Anyway, as for now I try to work out daily by walking and wearing my compression hose everyday. I have never wrapped my leg since that never helped me. I make sure to moisturize to keep the skin soft and prevent cracking that can lead to infections, and try to keep a good diet with little to no sodium and I also drink ALOT of water and take cranberry capsules which I believe help. I do not do massages as those have also never helped, but wearing the right compression stockings and diet and excersice do...(for me anyway). I hope this does help. It stinks, but always know you are not alone. I always feel alone because I look at everyone's legs everywhere I go and I never see anyone with this, but I know they are out there and I am not alone in this. Good Luck!

pinkone338 08-19-2011 09:29 PM

Re: lymphedema concerns
 
Hi Gretchen--
Sorry to hear that you now have lymphedema. Please remember, that the first year is REALLY the hardest to get through.....physically and mentally. Try not to dwell on the "forever" aspect of it as the lymphedema will morph and change over the first year and then it will settle down a bit. During that time, you will be learning what best manages it and your arm (and hand) will be learning how to "re-direct" the lymph fluid to different pathways. It takes time but it will settle down. If you keep up on the massage and compression that first year, your arm/hand will learn those new pathways on a consistant basis. Try not to rush into "new surgeries" and expensive pumps just yet.....wait a full year. The surgery that transplants lymph nodes from other parts of the body seems ideal, but, then that area where the nodes are taken from is compromised, And the one where they re-drect it through a vein......hmmmm. I know that I do not want ANY more surgery in that area....but that's just me. Just "hunker down" for about another 9 months (you were just diagnosed in May, right?) and go to the appts., wear the dumb sleeves and gloves, keep yourself cool, and educate yourself. I only had the arm lymphedema for the first 5 months (I was only wearing a sleeve then) and then-wham!- I got it in my hand and now have to wear both. Gauntlets don't help hand lymphedema once you have it there. I think gauntlets help KEEP IT OUT OF THE HANDS.....if only I'd been told to wear one earlier to maybe PREVENT the hnad/fingers from swelling.

Good Luck and I hope this helps!! Hang in there!

Linda

GretchenS 09-07-2011 10:47 AM

Re: lymphedema concerns
 
[QUOTE=sharona714;4825674]Hi Gretchen,
I am so sorry you are going through this. It does suck, but please rest assured knowing there are new advances in treatment options popping up everyday. I like you, knew what it was right away and was devasted. I was alwayst the kind of person that excersised and ate right and took pride in how I looked so to have this happen to my leg was unbearable. It's been over 3 years and I can deal with pretty well most of the time but I do break down every now and then. I just try to always think this is NOT forever-not for me anyway :). I know there is a cure on the horizon and just that fact that there are several surgical options is a step up from where this was 5 years ago. I am exploring surgical options myself and am seriously considering going to see a Dr. in Sweden who has had much success in reducing and even eliminating lymphedema by a type of liposuction. My LE Dr and therapist gave me his info and said he is very good at this. His name is Dr. Brorson and he is in Malmo, Sweden (if you want to search him online) There is also a Dr. Levine in NYC who does another type of surgery for LE, and another Dr. in TX (I forgot his name) but you see, it is happening. Don't give up hope. The only problem for me now is the cost, as insurance does not pay, but I hope in time that will change since this condition CLEARLY is more than just a "cosmetic" burden.
Anyway, as for now I try to work out daily by walking and wearing my compression hose everyday. I have never wrapped my leg since that never helped me. I make sure to moisturize to keep the skin soft and prevent cracking that can lead to infections, and try to keep a good diet with little to no sodium and I also drink ALOT of water and take cranberry capsules which I believe help. I do not do massages as those have also never helped, but wearing the right compression stockings and diet and excersice do...(for me anyway). I hope this does help. It stinks, but always know you are not alone. I always feel alone because I look at everyone's legs everywhere I go and I never see anyone with this, but I know they are out there and I am not alone in this. Good Luck![/QUOTE]

Thank you for all your tips! I exercise very regularly and eat right as well - though I've never heard of the cranberry capsules. I'll check those out. It's sometimes difficult emotionally to wear the garments every day! Some days, I simply want to forget about it, but I pay later-Ha. I too am very hopeful about the surgical advances. I have heard tell of patients in Sweden who have totally been cured as well!Thank you for the names. I hope you are able to follow through with that - or something closer. I will be there someday too. I wonder how we can get insurance to pay for these treatments. I imagine not until there has been much more research and proven success. - Also, I have felt the same loneliness through this entire 'adventure'. I know there are many people out there who are receiving cancer treatments, but why don't I see anyone with a scarf or baseball cap on their head. I hated wearing a wig, and I presume I am not alone, so where are they? And the same for the lymphedema. I do have a cousin with lymphedema. Hers gradually got better and she never has to wear any type of pressure garment - though I do think hers was less severe. But still, it gives me hope. Please feel free to post any updates. I would love to hear any good news! Take care - and thanks for the post.

GretchenS 09-07-2011 11:00 AM

Re: lymphedema concerns
 
Hi Linda - this is really good to know. I admit that sometimes I do dwell on the forever part. And I tell myself I better just get used to it! The hand is the worst. Not being able to make a fist, and it's not a very flattering look :-). But I do remind myself I am lucky that it's in my right arm/hand (I am left handed). It is usually very easy to be diligent about all my wraps and messages. It actually feels better to be in the compression garments. But on occasion I will go a day with out wearing anything just because I need to emotionally. I will look forward to my one year mark. I truly appreciate the encouraging words. Feel free to send any other good news!

GretchenS 09-07-2011 11:06 AM

Re: lymphedema concerns
 
Sharon - I posted a 'quote reply' to you but don't know why it is not showing up. I hope you received my message - I am not going to retype in in case you did! Thanks for ALL your info. Would love any updates.


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