The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Lymphedema?

Forums General Melanoma Community Lymphedema?

  • Post
    shellebrownies
    Participant

    We're about  4 weeks out from Don's biopsy/lymphectomy and this morning he got up and his right arm was swollen. He said he was a bit more sore than normal also. It's important to note that he is not yet receiving any treatment for the Melanoma because they are still staging him. (He goes for repeat PET on Friday 4/29 and his next Onco appt is Friday 5/6)

    We're about  4 weeks out from Don's biopsy/lymphectomy and this morning he got up and his right arm was swollen. He said he was a bit more sore than normal also. It's important to note that he is not yet receiving any treatment for the Melanoma because they are still staging him. (He goes for repeat PET on Friday 4/29 and his next Onco appt is Friday 5/6)

    He just saw the surgeon last Friday because he was having on and off bouts of increased pain. Surgeon had said everything looked good, no sign of infection, and he removed the rest of the Steri Strips, which did seem to help with the pain. We thought everything was moving along fine.

    We called the onco, who thought after talking with my husband that it is most likely Lymphedema and we should look into getting him a compression sleeve. The surgeon's office is getting back to us in the morning about it, but the surgeon didn't seem too concerned (not concerned enough to have him come back in).

    My questions are these: How do we know if that's what it is? What are the common symptoms (other than the swelling)? What can we do to make it better/go away? Is he going to be stuck like this forever and will it affect other possible treatments in that area? Will it affect his PET scan on Friday if it's still swollen?

    Any information anyone can give would be very much appreciated. Thank you!

     

    Michelle, wife of Don, Stage IIIC (for now)

    Loading spinner
Viewing 11 reply threads
  • Replies
      lhaley
      Participant

      Ask your Dr. for a referral to a lymphedemia specialist.  They will teach your husband how to properly massage the area to keep the lymphatic system passing the fluids.  Each person is different so there is no way of saying how long the swelling will last. Compression garments work but a specialist can make such a huge difference in educating Don on what to do.  A lymphedemia specialist is usually either in Physical Therapy or Occupational therapy.

      Linda

      Loading spinner
      lhaley
      Participant

      Ask your Dr. for a referral to a lymphedemia specialist.  They will teach your husband how to properly massage the area to keep the lymphatic system passing the fluids.  Each person is different so there is no way of saying how long the swelling will last. Compression garments work but a specialist can make such a huge difference in educating Don on what to do.  A lymphedemia specialist is usually either in Physical Therapy or Occupational therapy.

      Linda

      Loading spinner
      Nicky
      Participant

      Yes, seeing a lymphoedema specialist is vital to help management of the condition.

      I have been living with lymphoedema for 11 years and I find with management, it is not too bad, I found that keeping the compression sleeve on as much as possible is very important.  If there is any sign of redness or infection in the area, see a doctor immediately.  I carry around some emergency antibiotics just in case, as the term they use "cellulitis" can come on very quickly and if left can cause serious infection and blood poisoning.  Also try and avoid insect bites and keep the limb clean and dry.  I have been to a few seminars on it and it is also important not to put on too  much weight as fat cells prevent the lymph fluid from moving around easier.

      I hope this helps.

       

       

      Loading spinner
      Nicky
      Participant

      Yes, seeing a lymphoedema specialist is vital to help management of the condition.

      I have been living with lymphoedema for 11 years and I find with management, it is not too bad, I found that keeping the compression sleeve on as much as possible is very important.  If there is any sign of redness or infection in the area, see a doctor immediately.  I carry around some emergency antibiotics just in case, as the term they use "cellulitis" can come on very quickly and if left can cause serious infection and blood poisoning.  Also try and avoid insect bites and keep the limb clean and dry.  I have been to a few seminars on it and it is also important not to put on too  much weight as fat cells prevent the lymph fluid from moving around easier.

      I hope this helps.

       

       

      Loading spinner
      Carol Taylor
      Participant

      Hi Michelle,

      To echo, your husband needs to see a lyphedema specialist before doing anything, stress anything, about this on his own, including going shopping for a compression sleeve (I needed a glove too).

      One thing I learned from mine is oncs really don't know much if anything about lymphedema, as evidenced by yours telling Don to get a sleeve. For one, he hasn't even been seen by anybody to make sure that it IS lymphedema!  Astounding!  Is your husband seeing a melanoma specialist onc, btw? Should be if he's not, a specialist shouldn't have made that big mistake!

      It actually, probably is lymphedema, but it still should be officially seen and diagnosed. The other poster was correct, you'll find these specialists in PT & OT departments, usually of your larger facilities because this is a fairly rare specialty within PT.

      The specialist will possibly do some wrapping of his arm to get it under control, teach the massage and other exercises, and once his arm gets down to more normal size, measure for proper fitting compression sleeve and a glove if needed. Don't go off on a shopping spree because you don't know what to get! There are different sizes, materials, compressions, etc…this will need to be done for him by the specialist!

      If he's not seeing a PT at all now, contact the onc and ask for a referral to one. If you're going to a large facility they should be affiliated with a PT provider that can link you to a specialist. You may need to travel to yours, or maybe not, depending on where you live and where the spec is.

      I go to Duke and they have one, but she networked and found me one closer to my home, and it's still over an hour away. You do what you need to do.

      So, please, find that specialist and make an appt before doing anything else!

      Lord, in Your mercy, please open this door! Amen.

      Loading spinner
      Carol Taylor
      Participant

      Hi Michelle,

      To echo, your husband needs to see a lyphedema specialist before doing anything, stress anything, about this on his own, including going shopping for a compression sleeve (I needed a glove too).

      One thing I learned from mine is oncs really don't know much if anything about lymphedema, as evidenced by yours telling Don to get a sleeve. For one, he hasn't even been seen by anybody to make sure that it IS lymphedema!  Astounding!  Is your husband seeing a melanoma specialist onc, btw? Should be if he's not, a specialist shouldn't have made that big mistake!

      It actually, probably is lymphedema, but it still should be officially seen and diagnosed. The other poster was correct, you'll find these specialists in PT & OT departments, usually of your larger facilities because this is a fairly rare specialty within PT.

      The specialist will possibly do some wrapping of his arm to get it under control, teach the massage and other exercises, and once his arm gets down to more normal size, measure for proper fitting compression sleeve and a glove if needed. Don't go off on a shopping spree because you don't know what to get! There are different sizes, materials, compressions, etc…this will need to be done for him by the specialist!

      If he's not seeing a PT at all now, contact the onc and ask for a referral to one. If you're going to a large facility they should be affiliated with a PT provider that can link you to a specialist. You may need to travel to yours, or maybe not, depending on where you live and where the spec is.

      I go to Duke and they have one, but she networked and found me one closer to my home, and it's still over an hour away. You do what you need to do.

      So, please, find that specialist and make an appt before doing anything else!

      Lord, in Your mercy, please open this door! Amen.

      Loading spinner
      CarolA
      Participant

      Michelle,   I had a total lymph node dissection of the left armpit (axilla) almost 6 years ago.   I remember the weird pains, that seemed to be attributed to nerve endings, or healing processes.    I did experience lymphedema issues and here's what I wanted you to knwo abouty my ordeal:   I ended up calling a breast cancer support group and they were helpful in my locating my therapist who was licensed in lymphatic massage therapy techniques, specifically a special accreditation of that, in addition to being a physical therapist.   Just a hint in a direction to find someone with that special ability.

      Lymphedema is a weird thing, at least I think so.    While I know it is there by my wrist size, I will all of a sudden feel some discomfort at my upper arm, under my arm, a strange awareness that isn't really manifested by a huge size difference—just "there"    Today I have on my compressions sleeve because I can sense that "there" feeling and I don't want this to get any worst.    I haven't had therapy in two years or more, I just go with my own sense of how I feel.   The compression sleeve I wear is just like a flesh-colored stocking from upper arm to the wrist.  I have not had to wear the hand garment.   At first I was so very self-conscious about it, hated it…. eh, now I don't care (maybe because I am 62).   I think at one time I measured my arm, but in time, I've jsut learned to go with the flow (pun intended).

      My arm swellling issues have never prevented any medical procedures, although I'm sure you husband knows he should not have his blood pressure taken on that side, blood drawn, IV's and should be careful of any cuts, etc.    I got myself a medic alert type of bracelet, and I'm always saying I'll get a different one to alert to that (especially when I travel).   I've really become so accustomed to this situation, even the "look" of ice cream scoop chunk taken out under my arm.   I don't think people notice either when I raise my arms above my head.    I hope his road will develop uneventfully and the weird tings and pangs will subside and that his swelling will not increase.    Good luck!

      CarolA                                                                                                                                                                                            

      Stage III

      Amherst, NY   

           

      Loading spinner
      CarolA
      Participant

      Michelle,   I had a total lymph node dissection of the left armpit (axilla) almost 6 years ago.   I remember the weird pains, that seemed to be attributed to nerve endings, or healing processes.    I did experience lymphedema issues and here's what I wanted you to knwo abouty my ordeal:   I ended up calling a breast cancer support group and they were helpful in my locating my therapist who was licensed in lymphatic massage therapy techniques, specifically a special accreditation of that, in addition to being a physical therapist.   Just a hint in a direction to find someone with that special ability.

      Lymphedema is a weird thing, at least I think so.    While I know it is there by my wrist size, I will all of a sudden feel some discomfort at my upper arm, under my arm, a strange awareness that isn't really manifested by a huge size difference—just "there"    Today I have on my compressions sleeve because I can sense that "there" feeling and I don't want this to get any worst.    I haven't had therapy in two years or more, I just go with my own sense of how I feel.   The compression sleeve I wear is just like a flesh-colored stocking from upper arm to the wrist.  I have not had to wear the hand garment.   At first I was so very self-conscious about it, hated it…. eh, now I don't care (maybe because I am 62).   I think at one time I measured my arm, but in time, I've jsut learned to go with the flow (pun intended).

      My arm swellling issues have never prevented any medical procedures, although I'm sure you husband knows he should not have his blood pressure taken on that side, blood drawn, IV's and should be careful of any cuts, etc.    I got myself a medic alert type of bracelet, and I'm always saying I'll get a different one to alert to that (especially when I travel).   I've really become so accustomed to this situation, even the "look" of ice cream scoop chunk taken out under my arm.   I don't think people notice either when I raise my arms above my head.    I hope his road will develop uneventfully and the weird tings and pangs will subside and that his swelling will not increase.    Good luck!

      CarolA                                                                                                                                                                                            

      Stage III

      Amherst, NY   

           

      Loading spinner
        Carol Taylor
        Participant

        CarolA's right, it becomes second nature. A new "normal." My spec says "It is what it is" and that's just what it is. Whatever it is for Don is how it is. And his won't look quite like anybody elses. I've had my "best friend for life" since Dec 2008. I call it my "mark of grace" because people will ask about it and it gives me a chance to tell them to keep a check on their skin and moles. Might as well use this!

        You did ask earlier about how long it lasts. Again, where a specialist comes in handy vs an onc when dealing with this. According to my lymphedema specialist, this is a lifelong condition once it starts. People who aren't specs might tell you differently and often will encourage disuse of compression garments once it's under control. Some people may be able to do that for a while, as CarolA says she can. Some of us can't, or don't want to try. I choose to wear mine all day every day while I'm awake (take it off at bedtime) because mine came on fast and furious and I don't want to go back through getting it under control again, so I choose to not worry about it and just wear the garments. That's what my spec advises and I take her word for it.

        Whatever you & Don choose to do, please don't choose what to do based on what "sounds good." Consult with someone who knows what Don's dealing with and do what needs to be done. It took me less than a month to get used to putting this thing on every morning and living with it. It is what it is and it is something that can be handled.

        All the best.

        Carol 3b

        Loading spinner
        Carol Taylor
        Participant

        CarolA's right, it becomes second nature. A new "normal." My spec says "It is what it is" and that's just what it is. Whatever it is for Don is how it is. And his won't look quite like anybody elses. I've had my "best friend for life" since Dec 2008. I call it my "mark of grace" because people will ask about it and it gives me a chance to tell them to keep a check on their skin and moles. Might as well use this!

        You did ask earlier about how long it lasts. Again, where a specialist comes in handy vs an onc when dealing with this. According to my lymphedema specialist, this is a lifelong condition once it starts. People who aren't specs might tell you differently and often will encourage disuse of compression garments once it's under control. Some people may be able to do that for a while, as CarolA says she can. Some of us can't, or don't want to try. I choose to wear mine all day every day while I'm awake (take it off at bedtime) because mine came on fast and furious and I don't want to go back through getting it under control again, so I choose to not worry about it and just wear the garments. That's what my spec advises and I take her word for it.

        Whatever you & Don choose to do, please don't choose what to do based on what "sounds good." Consult with someone who knows what Don's dealing with and do what needs to be done. It took me less than a month to get used to putting this thing on every morning and living with it. It is what it is and it is something that can be handled.

        All the best.

        Carol 3b

        Loading spinner
      Linny
      Participant

      Do have him see someone who specializes in Lymphedema. This site has information that may help you, including a list of symptoms, treatment centers, etc.

      http://www.lymphnet.org/

      Just know that there are ways to manage the condition.

      For the record I woke up one morning a few weeks ago and had also noticed that my one arm was more swollen than the other. It scared me, but I did manage to get the swelling down while in the shower. All I did was hold the affected arm up against the wall of the shower and massaged it from the wrist down past my shoulder by gently stroking it, if that makes any sense. The soap made it nice and slippery. The swelling subsided but it did alarm me and after a little research I did find an occupational therapist near me who specializes in Lymphedema.

      I saw her last week and was measured for a compression sleeve. We're flying to Florida in 2 weeks and I didn't want to have any problems with my arm swelling during the flight .  I go pick up my "lovely lavender" colored sleeve tonight (no beige for me!). At my initial visit I learned a lot about the different exercises you can do to manage Lymphedema.  I know I'm repeating myself, but the important thing to know is that it can be managed.

      Loading spinner
      Linny
      Participant

      Do have him see someone who specializes in Lymphedema. This site has information that may help you, including a list of symptoms, treatment centers, etc.

      http://www.lymphnet.org/

      Just know that there are ways to manage the condition.

      For the record I woke up one morning a few weeks ago and had also noticed that my one arm was more swollen than the other. It scared me, but I did manage to get the swelling down while in the shower. All I did was hold the affected arm up against the wall of the shower and massaged it from the wrist down past my shoulder by gently stroking it, if that makes any sense. The soap made it nice and slippery. The swelling subsided but it did alarm me and after a little research I did find an occupational therapist near me who specializes in Lymphedema.

      I saw her last week and was measured for a compression sleeve. We're flying to Florida in 2 weeks and I didn't want to have any problems with my arm swelling during the flight .  I go pick up my "lovely lavender" colored sleeve tonight (no beige for me!). At my initial visit I learned a lot about the different exercises you can do to manage Lymphedema.  I know I'm repeating myself, but the important thing to know is that it can be managed.

      Loading spinner
      shellebrownies
      Participant

      Thank you, everyone, for your help. :) 

      To be fair, the Onco we spoke with was the fellow to our Melanoma specialist…and the surgeon's office just said it didn't surprise them that Don had this pop up with the amount of tissue they removed and that it comes and goes. Neither were very helpful, except that the surgeon wrote an Rx for a compression sleeve (which we haven't filled yet).

      We tried to get in to see the onco while we were in Boston for Don's PET scan tomorrow, but they couldn't get us in. However, I would think that there has to be SOMEONE we can ask there for referral info (I would think that a cancer hospital might see patients with this more than perhaps other doctors.).

      Would a lymphedema specialist have to be the one to diagnose the condition or could his PCP do that? We could probably get him seen tomorrow by the PCP if that's all it takes. 

      Mind you, his arm did not look like the Elephant man or anything, just that there was a definite swollen look about his arm, especially from elbow to wrist. Today, after sleeping last night with his arm elevated, it still seemed swollen but definitely better. 

      Was this sort of problem inevitable because of the amount of lymph tissue removed under his arm? Because I think it would have been nice to be made aware of that. We heard it mentioned in passing when he had the drain in, but they made it sound that if he had the drain in until it stopped producing as much fluid, he wouldn't have a problem… 

      (Ugh, I hate being  a newbie! I like knowing what's going on and I really feel like I know very little about all this…)

      Loading spinner
        Carol Taylor
        Participant

        Michelle,

        Please, please stop talking with any kind of cancer dr about the lymphedema..that's NOT the person Don needs to be seeing for that or needs to be consulted!  Lymphedema isn't melanoma or cancer. It came about because the lymph nodes were removed and aren't there to circulate the lymph fluid. This is out of your oncs field of knowledge.

        Yes, he needs a lymphedema specialist with this and you'll find one in physical therapy facilities…though not all have them as they are a fairly rare bird.

        You don't just go putting a compression garment on, off the rack, without knowing what you're doing! This is really ludicrous that your onc is telling you all this!  First, after the diagnosis, the swelling will have to be brought down! Don't put compression on it until it's down. Also, Don doesn't know what amount of compressions he needs, size, material, anything. Don't buy anything off the rack just because someone writes you a prescription!

        The problem wasn't inevitable. Most people don't get lymphedema. Only 4-6% of patients do. But that's still a pretty high number of people. A trained LS will also know how to work with Don with the drain. Important.

        PLease, Michelle, based on this episode and the other you're writing about, I'm very,VERY concerned about who Don's seeing. Frankly, I hope you'll investigate melanoma specialsists, even if this person is one, and go some place else. This scares me. Seriously, this scares me.  Let me know what I can do to help.

        Lord,in Your mercy, open doors!!!! Amen.

        Grace and peace,

        Carol

        Loading spinner
        shellebrownies
        Participant

        Carol, 

        Trust me, after what you all had to say about it, I have no intention of filling the prescription for the sleeve. Someone mentioned a website that lists specialists and I found one not far from here that I am going to try to get him in with. I have not been exactly thrilled with the doctor Don is seeing either (or really, I think the fellow we've been dealing with and who has answered when we call). I am giving them until our upcoming appt next Friday to impress me or we will be transferring his case to Dr. Hodi or perhaps even get a 2nd opinion at the Melanoma Center at Mass General.

        Loading spinner
        Carol Taylor
        Participant

        I'll tell you Michelle, even though I consider myself "old hat" at this, I still have some raw nerves about some things!  I know I hide it well! :)   Lucky you!  You've managed to hit a home run and trigger more than one sore spot!  All the best!

        Grace and peace,

        Carol

        Loading spinner
        shellebrownies
        Participant

        I'm sorry to rub your sore spots… : )  But I really do appreciate your input. Your listening ear and advice, as well as others on here, have been a Godsend. :)

        Thanks!

        Loading spinner
        Carol Taylor
        Participant

        I think we all see things that irritate us!  And we see them over and over!  And now, we've got our friend in Spain who has a serious looking mole and can't get anything done till NOVEMBER! Unreal! I know there are calendars in Spain! I don't get it. I'm going to kick my soapbox out from under myself before I get going.  I tell you! "Preacher" and "Mama" are a deadly combination!

        You don't hit my sore spots, it's the "way things are" that does, you just got lucky and had two of them yourself! God sure smiled at you!

        Grace and peace,

        Carol

        Loading spinner
        Carol Taylor
        Participant

        I think we all see things that irritate us!  And we see them over and over!  And now, we've got our friend in Spain who has a serious looking mole and can't get anything done till NOVEMBER! Unreal! I know there are calendars in Spain! I don't get it. I'm going to kick my soapbox out from under myself before I get going.  I tell you! "Preacher" and "Mama" are a deadly combination!

        You don't hit my sore spots, it's the "way things are" that does, you just got lucky and had two of them yourself! God sure smiled at you!

        Grace and peace,

        Carol

        Loading spinner
        shellebrownies
        Participant

        I'm sorry to rub your sore spots… : )  But I really do appreciate your input. Your listening ear and advice, as well as others on here, have been a Godsend. :)

        Thanks!

        Loading spinner
        Carol Taylor
        Participant

        I'll tell you Michelle, even though I consider myself "old hat" at this, I still have some raw nerves about some things!  I know I hide it well! :)   Lucky you!  You've managed to hit a home run and trigger more than one sore spot!  All the best!

        Grace and peace,

        Carol

        Loading spinner
        shellebrownies
        Participant

        Carol, 

        Trust me, after what you all had to say about it, I have no intention of filling the prescription for the sleeve. Someone mentioned a website that lists specialists and I found one not far from here that I am going to try to get him in with. I have not been exactly thrilled with the doctor Don is seeing either (or really, I think the fellow we've been dealing with and who has answered when we call). I am giving them until our upcoming appt next Friday to impress me or we will be transferring his case to Dr. Hodi or perhaps even get a 2nd opinion at the Melanoma Center at Mass General.

        Loading spinner
        Carol Taylor
        Participant

        Michelle,

        Please, please stop talking with any kind of cancer dr about the lymphedema..that's NOT the person Don needs to be seeing for that or needs to be consulted!  Lymphedema isn't melanoma or cancer. It came about because the lymph nodes were removed and aren't there to circulate the lymph fluid. This is out of your oncs field of knowledge.

        Yes, he needs a lymphedema specialist with this and you'll find one in physical therapy facilities…though not all have them as they are a fairly rare bird.

        You don't just go putting a compression garment on, off the rack, without knowing what you're doing! This is really ludicrous that your onc is telling you all this!  First, after the diagnosis, the swelling will have to be brought down! Don't put compression on it until it's down. Also, Don doesn't know what amount of compressions he needs, size, material, anything. Don't buy anything off the rack just because someone writes you a prescription!

        The problem wasn't inevitable. Most people don't get lymphedema. Only 4-6% of patients do. But that's still a pretty high number of people. A trained LS will also know how to work with Don with the drain. Important.

        PLease, Michelle, based on this episode and the other you're writing about, I'm very,VERY concerned about who Don's seeing. Frankly, I hope you'll investigate melanoma specialsists, even if this person is one, and go some place else. This scares me. Seriously, this scares me.  Let me know what I can do to help.

        Lord,in Your mercy, open doors!!!! Amen.

        Grace and peace,

        Carol

        Loading spinner
        lhaley
        Participant

        I was given my referral when I had my first appointment with the surgeon.  I did not have lymph nodes removed, I had a latisimus flap procedure for the breast reconstruction that they had to do and this had disturbed the lymphatic pathway.  In return the occupational therapist had to report to the surgeon with my progress. You do not want a PCP doing the referral because you want the lymphademia specialist to have someone with knowledge be the person they are communicating with.  Also, I personally had issues with insurance and when th rebuttal was written (at that point I owed $4,000) I needed it to be written by someone that could get it paid!!  All ended up paid after they wrote an explaination of why it was needed.   Part of my referal was for movement as well as general swelling.

        Sadly the longline bra that I was put in by the LS, and was specially fitted for was not paid for, had I had breast cancer it would have been.  That was 5 years ago, I don't know if that would be different now or not. 

        My suggestion is to call and see if you can get into see the surgeon for a few minutes tomorrow while your there for the PET. 

        Linda

        Loading spinner
        lhaley
        Participant

        I was given my referral when I had my first appointment with the surgeon.  I did not have lymph nodes removed, I had a latisimus flap procedure for the breast reconstruction that they had to do and this had disturbed the lymphatic pathway.  In return the occupational therapist had to report to the surgeon with my progress. You do not want a PCP doing the referral because you want the lymphademia specialist to have someone with knowledge be the person they are communicating with.  Also, I personally had issues with insurance and when th rebuttal was written (at that point I owed $4,000) I needed it to be written by someone that could get it paid!!  All ended up paid after they wrote an explaination of why it was needed.   Part of my referal was for movement as well as general swelling.

        Sadly the longline bra that I was put in by the LS, and was specially fitted for was not paid for, had I had breast cancer it would have been.  That was 5 years ago, I don't know if that would be different now or not. 

        My suggestion is to call and see if you can get into see the surgeon for a few minutes tomorrow while your there for the PET. 

        Linda

        Loading spinner
        Linny
        Participant

        Please, please go to the link I gave you in an eariler and read up on Lymphedema and to find a specialist in your area. That site helped me connect with someone who lives near me.

        Carol's right — you can't just go buy a compression sleeve off the rack. Don needs to be measured for one by someone who knows what they're doing. You don't want one that's too loose because it'll be ineffective and one that's too tight will do more harm than good.

        A lymphedema specialist will also be able to educate you and him on the condition. Your body needs to learn to compensate for the lack of those axillary lymph nodes. This involves doing some simple exercises. Hey, an ounce of prevention is worth a pound of cure, right? Plus you don't want to keep that sleeve on all the time.

        All this should be covered by insurance. At least it was for me.

        You can't do too much too soon with the affected arm or it will begin to swell. Make sure that Don is not inadvertently doing something to exacerbate it. For example, my arm and hand swelled after doing some weeding so it doesn't take much.

        I hope that the oncologist at least explained to you and Don that he no longer can have blood pressure taken in that arm or get injections in that arm.

        Linda

        Loading spinner
        Linny
        Participant

        Please, please go to the link I gave you in an eariler and read up on Lymphedema and to find a specialist in your area. That site helped me connect with someone who lives near me.

        Carol's right — you can't just go buy a compression sleeve off the rack. Don needs to be measured for one by someone who knows what they're doing. You don't want one that's too loose because it'll be ineffective and one that's too tight will do more harm than good.

        A lymphedema specialist will also be able to educate you and him on the condition. Your body needs to learn to compensate for the lack of those axillary lymph nodes. This involves doing some simple exercises. Hey, an ounce of prevention is worth a pound of cure, right? Plus you don't want to keep that sleeve on all the time.

        All this should be covered by insurance. At least it was for me.

        You can't do too much too soon with the affected arm or it will begin to swell. Make sure that Don is not inadvertently doing something to exacerbate it. For example, my arm and hand swelled after doing some weeding so it doesn't take much.

        I hope that the oncologist at least explained to you and Don that he no longer can have blood pressure taken in that arm or get injections in that arm.

        Linda

        Loading spinner
        washoegal
        Participant

        Michelle,

        If you have a regular PCP that will work with you and pretty much does what you ask – I'm lucky I have one of those – he/she might be willing to give you the referral to a lymphedema specialist if you need one for insurance purposes.  I went on my own because my coverage was so poor on this that I figured I didn't want to wait.  It only took about 4 sessions and I was good to go on my own.  Mine was also in the arm.  Unfortunately, I waited too long and got mastitis due to lymphedema in the breast so that had to be cleared before anything else could start.  My PCP took care of that.

         

        Good Luck

        Mary

        Stage 3

        Loading spinner
        washoegal
        Participant

        Michelle,

        If you have a regular PCP that will work with you and pretty much does what you ask – I'm lucky I have one of those – he/she might be willing to give you the referral to a lymphedema specialist if you need one for insurance purposes.  I went on my own because my coverage was so poor on this that I figured I didn't want to wait.  It only took about 4 sessions and I was good to go on my own.  Mine was also in the arm.  Unfortunately, I waited too long and got mastitis due to lymphedema in the breast so that had to be cleared before anything else could start.  My PCP took care of that.

         

        Good Luck

        Mary

        Stage 3

        Loading spinner
      shellebrownies
      Participant

      Thank you, everyone, for your help. :) 

      To be fair, the Onco we spoke with was the fellow to our Melanoma specialist…and the surgeon's office just said it didn't surprise them that Don had this pop up with the amount of tissue they removed and that it comes and goes. Neither were very helpful, except that the surgeon wrote an Rx for a compression sleeve (which we haven't filled yet).

      We tried to get in to see the onco while we were in Boston for Don's PET scan tomorrow, but they couldn't get us in. However, I would think that there has to be SOMEONE we can ask there for referral info (I would think that a cancer hospital might see patients with this more than perhaps other doctors.).

      Would a lymphedema specialist have to be the one to diagnose the condition or could his PCP do that? We could probably get him seen tomorrow by the PCP if that's all it takes. 

      Mind you, his arm did not look like the Elephant man or anything, just that there was a definite swollen look about his arm, especially from elbow to wrist. Today, after sleeping last night with his arm elevated, it still seemed swollen but definitely better. 

      Was this sort of problem inevitable because of the amount of lymph tissue removed under his arm? Because I think it would have been nice to be made aware of that. We heard it mentioned in passing when he had the drain in, but they made it sound that if he had the drain in until it stopped producing as much fluid, he wouldn't have a problem… 

      (Ugh, I hate being  a newbie! I like knowing what's going on and I really feel like I know very little about all this…)

      Loading spinner
Viewing 11 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.