and then came...lymphedema.

KsGal · 05-04-2012, 02:57 AM

Well, I was feeling pretty excited about my scans being so positive, and then also having only one more chemo treatment this round before a break...and I wake up one morning and my index finger looks like, I don't know, a carrot. LOL! No, I just had a big swollen index finger. I didn't know what it was. For the past couple days I now have "Mickey Mouse" hand. I know have an appointment with a lymphedema specialist. Anyone who has had this want to share? Im pretty bummed, as so far I have made it through this working 45 hours a week and being able to keep my insurance. Now the impression I am getting is I might have to quit my job due to this lymphedema (I use my arm/hand a lot at work).

snolan · 05-04-2012, 07:08 AM

I have worked a lot with lymphadema patients. Unfortunatly once you have it you will always have it. But it can be controlled, once you start treatment the swelling can be reduced an maintained to where you should be able to perform normal activities depending on what you use your hand for. Be compliant with wearing your wrapings or compression garments as this is what will keep the swelling in check. Hope all goes well for you.

Debbie L. · 05-04-2012, 07:53 AM

Dear KS. Dangit, that wasn't a nice morning surprise for you (although the carrot comment made me laugh). I feared lymphedema almost more than cancer, in the early days. I did end up with a mild case that has been easily controlled these 11 years, although as Snolan said, it hasn't disappeared altogether.

I hope yours will be easily manageable also. I hope that appointment with the therapist is soon. If it's not, and you feel the swelling is getting worse, call and get them to bump up your appointment, because the sooner you get on it, the easier it will be to get a good response and keep it under control.

I wouldn't think you'd have to quit your job. What kind of arm/hand movements are involved? I learned quickly what kinds of things aggravated my arm, but instead of having to quit doing those things, I still do them but always with close attention to the exercises and manual lymph drainage (your therapist will teach you about that) that works best for me and my arm.

I do think that each case of lymphedema is different -- different triggers, different things that help the most. And so it will take awhile for you to learn what works, and what doesn't, as you manage your lymphedema. Some people get it only in their hand, others will have giant upper arms with the hand unaffected, still others it's in the chest or breast. Or all of those places.

If your lymphedema therapist seems too autocratic, with lots of mandates as to what you MUST do or not do -- I'd suggest that you get a second opinion. Lymphedema research is a work in progress. There are a lot of leftover mandates from the days before we had ANY research. The mandates were formulated by people with the best of intentions but some of them, upon closer investigation, just do not seem to be true.

Sorry to run on. Lymphedema is a favorite topic of mine. I even took the class to be a therapist, before discovering that while RNs can be certified as therapists, they cannot be reimbursed for their work (sheesh). But that was 10 years ago and there have been lots of advances in our knowledge since then.

Good luck and keep us posted.

Debbie Laxague

ElaineM · 05-04-2012, 09:53 AM

Sorry about the pesky lymphedema. Hopefully the therapist can give you some exercises to help.

chicagoetc · 05-06-2012, 02:33 PM

Lymphedema is not fun. Have hope. It is generally controllable with the right treatment... Hopefully you have a lymphedema trained physical therapist you can access.

Melanie

vlcarr · 05-06-2012, 10:35 PM

I so feel your pain. I've been living with lymphedema since radiation. I'm back with my therapists twice a week now. I wish I knew why it flared up this time, but have no clue. I will not lie. I hate it. It's a daily reminder & just prevents me from moving on. Mine is worse in the heat, used to love summer, now I dread it. It has changed who I was much more than the cancer itself. Don't mean to be negative, but honest. I can only speak for myself. Then I feel guilty for feeling this way, because I "should" be happy I'm alive. I saw something recently that called lymphedema breast cancer's dirty little secret.

With all that out of the way.....I wear a compression sleeve all day, every day & have since I developed it during radiation, I wear a sleeve at night & I have a Flexitouch machine that I use pretty much every day. My arm size is not bigger but I have no doubt it would if I did not constantly stay on top of it. I am a good patient even if I hate it. I work on a computer all day. This last flare is the worst I've had. I have to take frequent breaks due to the pain. I am going to look into a program the Y has for bc survivors & try to get a more formalized exercise program to see if that will help. I do exercise the arm but not as regularly as I should. With a full time job and an hour a day in the machine it's a time thing. I feel like my life is consumed by trying to manage it & I resent not having time for a life, so yeah, I fall down with the exercises & admit that. I spoke to my boss on Friday about taking leave to do some of this during the day but I don't know how long I can keep that if it doesn't get better. There are VERY good therapists out there but do shop around. I switched from the ones I had originally. The hospital that treated my bc is the best here, but their lymphedema program is not. I've also found where you get your garments & bras is also very critical. I also have it in my chest & side as well so I also use swell spot. Sorry to go on & on but your post hit at such a frustrating time for me. I know more about lymphedema than I care to but please feel free to IM me if you ever feel the need.

I also travel from time to time & wear a gauntlet when I do that. I so hope you get good results with your therapy.

Jackie07 · 05-06-2012, 11:07 PM

I developed lympedema after getting some very tiny bug bites while picking figs in the back yard. The redness crept toward my elbow before I went to the doctor and was put on antibiotic/IV immediately for cellulitis. After the swelling was down and the inflammation was gone, I was fitted with compression sleeve and glove. I've been wearing it faithfully everyday until earlier this year when I felt everything's pretty much back to 'normal'. So I only wear them when I'm out in the yard (for protection) and/or when I'm doing 'heavy' lifting such as carrying a barrel of water to the backyard.

KsGal · 05-18-2012, 10:20 PM

I have an appointment with the lymphedema specialist on the 25th. Mine is still pretty much confined to my index finger thumb and palm of my left hand. Im am so sorry to hear how hard lymphedema has been for you all. UGH! I had an appointment with my oncologist, where I told him I was developing lymphdema, and he looked at me and said "That is not lymphedema." So I asked what it was, and he said "Its some swelling. We do not see a puddle and call it an ocean." What?? Im doing the lymphdema massage and exercises I learned by watching youtube, and it doesn't seem a lot better, but it has not progressed either. I wake up with a regular size hand, but any activity at all just sets it off. I had this bizarre concept that women that got lymphedema where the ones who had many nodes removed, so of course I was wrong about that one and now I am feeling pretty whiney about the whole darned thing.

vlcarr · 05-19-2012, 09:13 AM

Ran across this yesterday. It's long but says everything I've thought & felt. The first study I've seen of this kind.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2795115/

valleygirl · 05-19-2012, 01:37 PM

should everyone who has had lymph nodes removed wear a compression sleeve? was wondering if it would help to prevent it. just wondering because my dr never talked about the compression sleeve

BonnieR · 05-20-2012, 12:55 PM

Valleygirl, it is my understanding that you only need a sleeve if you exhibit symptoms of lymphedema. I saw a specialist when I developed very mild case in one arm. She suggested the sleeve for flying. And only on the affected side.
It is important to avoid sunburn, hot tubs, bug bites. Things that might set it off. Once my arm got very hot and swollen and I needed Cipro to avoid cellulitis... Most of the time I am totally unaware because my case is so very mild.
At the beginning I was given massages by a specialist technician.
Anyway, as long as you dont have it, you dont need to treat it! In fact, I think I heard that the sleeve would be detremental if worn without cause
Keep the faith

valleygirl · 05-20-2012, 01:35 PM

Thanks for the imformation Bonnie!

BonnieR · 05-20-2012, 04:24 PM

Oh, don't let them use the affected arm for BP or blood draws anymore. I got a small medic alert bracelet to remind everyone
Keep the faith

Sheila · 05-21-2012, 04:54 AM

I am viligent about wearing my sleeve and gauntlet , and have kept mine in check by doing so....i developed lymphedema 5 years into my BC journey...after wearing the medical sleeves for a year or two, I discovered Lymphedivas...a sleeve company started by breast cancer survivors....I love their sleeves and gloves (gauntlets) , and my insurance company covers them!

www.lymphedivas.com

Jackie07 · 10-15-2012, 02:29 PM

Received this message from CancerConnect:

Managing Lymphedema: Web Chat with Stephen Edge, MD, FACS and Kathleen Fassl, PT

Dr. Edge is the Alfiero Foundation Endowed Chair in Breast Oncology, Medical Director of the Breast Center and Chief of Breast Surgery in the Department of Surgical Oncology at Roswell Park Cancer Institute. Ms. Fassl is the Co-Director of Lymphedema Management Services at Roswell Park Cancer Institute. Click here for Dr. Edge’s bio and here for Ms. Fassl’s bio.
Lymphedema refers to swelling due to an accumulation of lymph fluid in a part of the body. The most common cause of lymphedema is removal of lymph nodes for the staging and treatment of cancer, including breast cancer, melanoma, and other types of cancer. More extensive removal of lymph nodes is more apt to cause lymphedema than the removal of only a small number of nodes (known as a sentinel lymph node biopsy), but lymphedema can occur following either procedure. It can also affect individuals who have had radiation to their lymph nodes or who have a tumor that blocks lymph drainage.
On October 30, 2012 at 6:00pm EST you will have the opportunity to ask the experts, Dr. Stephen Edge and Kathleen Fassl, PT about how lymphedema occurs and how best to manage it. Dr. Edge is actively involved in clinical research and continues to lead innovative studies in breast cancer, and Ms. Fassl, a trained lymphedema specialist and a breast cancer survivor herself, manages many patients dealing with lymphedema through physical therapy.
Following the presentation, there will be a live Q&A. Click here to submit a question to Dr. Edge or Ms. Fassl that will be answered during the Live Web Chat (time permitting). Please note that we will do our best to respond to all questions during the 30-minute live Q&A portion of the program. Thank you for your participation. The Live Web Chat is not intended to be a substitute for healthcare professional medical advice, diagnosis, or treatment. Speak to your healthcare provider about any questions you may have regarding your

carlatte7 · 10-15-2012, 05:09 PM

Argh! Me too---just yesterday. Im down to 2 rads and now- "swelling" but seeing lymphedema specialist this week. Good luck!

KsGal · 10-17-2012, 11:13 PM

Thank you Jackie! Just an update, I still have lymphedema. It is only really noticeable in my index finger and thumb on the side where I had my nodes removed. It looks ridiculous, but doesn't feel bad and has not spread, so far. ((hugs)) to everyone who had had to deal with this...

Jackie07 · 10-18-2012, 01:26 AM

http://cancerconnect.com/rpci-lymphedema-webchat/
On Tuesday October 30th, at 6 PM EST Dr. Stephen Edge and Kathleen Fassl, PT from Roswell Park Cancer Institute will discuss and field questions on managing lymphedema on CancerConnect. Dr. Edge is the Medical Director of the Breast Center and the Chief of Breast Surgery in the Department of Surgical Oncology at Roswell Park Cancer Institute. Ms. Fassl is the Co-Director of Lymphedema Management Services at Roswell Park Cancer Institute. Click here for Dr. Edge’s bio and here for Ms. Fassl’s bio.
Fill out the form below to pre-register for the Web Chat and/or to submit a question to Dr. Edge and Ms. Fassl that will be answered during the Live Web Chat (time permitting). Please note that we will do our best to respond to all questions during the 30-minute live Q&A portion of the program.
CancerConnect is a safe and private way to connect with others in a fully-moderated setting which provides a place for patients and caregivers to share experiences, offer support, and have access to up-to-date and medically reviewed information on cancer treatment. Join the conversation now by registering or logging in.

[You probably need to get a [Free] CancerConnect user name/password before registering/participating in the Webchat.]
PT= Physical Therapist

carlatte7 · 10-18-2012, 03:04 PM

Saw the lymphedema PT today. My case is very mild, but the level of pain is NOT relative to the amt of swelling! Yow! Pain and twangy nerves from elbow to fingers. My fingernails are throbbing, almost like they did with taxotere. She taught me massage techniques, showed me some exercises, and measured for my sleeve. (We are leaving for a week in Haiti, and she recommended it for flight.). I just got done with rads yesterday.

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