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lymphedema
Recently, I have been diagnosed with lymphedema in my left leg, and it is now moving into my left leg as well.
During my last surgery (secondary cytoreduction for recurrent ovarian cancer) my surgeon had to remove many lymph nodes in my abdomen, so i guess it is not surprising that two years later I am developing lymphedema.
However, I feel devastated by this new development.After dealing with stage 3c disease for five years I am unprepared for this .I have found a therapist in lymphatic dainage who is helping me with bandaging and compression garments but feel truly overwhelmed. The treatment itself seems so primitive,and when I asked my gyno-onc if there was any additional support for lymphedema caused by gynocological cancers,he answered that in the past most women didn,t live long enough to have a problem with lymphedema.
Does anyone have any tips for living with this? Are there any new breakthroughs in treatments ?I would love to hear from others in the same predicament.
Thanks for the opportunity to vent!
Anne
During my last surgery (secondary cytoreduction for recurrent ovarian cancer) my surgeon had to remove many lymph nodes in my abdomen, so i guess it is not surprising that two years later I am developing lymphedema.
However, I feel devastated by this new development.After dealing with stage 3c disease for five years I am unprepared for this .I have found a therapist in lymphatic dainage who is helping me with bandaging and compression garments but feel truly overwhelmed. The treatment itself seems so primitive,and when I asked my gyno-onc if there was any additional support for lymphedema caused by gynocological cancers,he answered that in the past most women didn,t live long enough to have a problem with lymphedema.
Does anyone have any tips for living with this? Are there any new breakthroughs in treatments ?I would love to hear from others in the same predicament.
Thanks for the opportunity to vent!
Anne
Jane:Sounds like your lymphedema will be resolved entirely. Mine will not unless someone comes up with a treatment...hopefully, something less barbaric.
Anne: Your doctor's comment regarding lymphedema and ovarian cancer is very true. In 1975, my mother only lived 18 months after her ovca diagnosis. I've worked in medical schools now for almost 40 years. The changes have been phenomenol. I don't think your doc meant to be insensitive.
Linda
Anne: Your doctor's comment regarding lymphedema and ovarian cancer is very true. In 1975, my mother only lived 18 months after her ovca diagnosis. I've worked in medical schools now for almost 40 years. The changes have been phenomenol. I don't think your doc meant to be insensitive.
Linda
Hi Linda,
Thanks for the information, I appreciate it and i have been checking out lymphedema on the net.
My oncologist firmly feels that as Gemzar starts to reduce the lymph node cancer, it will allow the channels to open and the lymph system to drain the leg.
He doesn't want me to wrap it or even do massage decongesting therapy. That's his decision, he feels everything except chemo is unnecessary.
Thanks again,
Jane
Thanks for the information, I appreciate it and i have been checking out lymphedema on the net.
My oncologist firmly feels that as Gemzar starts to reduce the lymph node cancer, it will allow the channels to open and the lymph system to drain the leg.
He doesn't want me to wrap it or even do massage decongesting therapy. That's his decision, he feels everything except chemo is unnecessary.
Thanks again,
Jane
I am a 1C, diagnosed in 2004. Chemo for 6 rounds. I developed lymphedema in Feb. 2009, after injuring my thigh. I understand that lymphedema can occur any time there is any trauma to the lymph drainage system and since I had 20+ nodes removed for biopsy, I was at risk.
I have been dealing with it since then. I have managed my swelling by wrapping at night and wearing a stocking during the day. I also use a pneumonic pressure machine called Flexitouch daily. The degree of swelling is not much different between my limbs, but I did catch it early and have been diligent about my daily routine.
There is a lot of information on the net. Look up National Lymphedema Network dot org and lymphedema people dot org on line.
I, too, was devastated with the diagnosis, but it is doable. I travel a lot, work full time, and have a good marriage (even when I look like the Michelin Man). Knowledge is power so get going and get some information. I'm here if you need me.
Linda
I have been dealing with it since then. I have managed my swelling by wrapping at night and wearing a stocking during the day. I also use a pneumonic pressure machine called Flexitouch daily. The degree of swelling is not much different between my limbs, but I did catch it early and have been diligent about my daily routine.
There is a lot of information on the net. Look up National Lymphedema Network dot org and lymphedema people dot org on line.
I, too, was devastated with the diagnosis, but it is doable. I travel a lot, work full time, and have a good marriage (even when I look like the Michelin Man). Knowledge is power so get going and get some information. I'm here if you need me.
Linda
Hi Anne,
I'm glad you did get my note, I think notes, or instant messages IM) are even a better way for us to communicate because we're discussing how we're dealing with a specific issue.
I like the IM better since we're not limited to how many letters we can write at a time, I hate going over my notes and cutting them down.
If that would be ok with you for us to chat about our lymphedema please let me know. If you'd prefer to do it on this website, that's also ok.
I do get those pins and needles in my leg when I first get up in the morning, then it goes away.
I'm having Gemzar alone, my oncologist wants to hold Avastin and other drugs for future use. I've already had carbo/taxol and Topotecan. He said I can expect to be on chemo the rest of my life, with no remission, i'm staged 4B epithelial.
I also find the lymphedema depressing, I handled the 2 surgeries, and 3 chemo drugs as necessary to deal with cancer, and hernia surgery as also necessary. The lymphedema is a ridiculous annoyance that was unexpected.
Be very careful with the wrapping you do, having your thighs get cold, or lose feeling is a sure sign the wrapping is too tight and cutting off blood flow.
Take care and have a good day,
Jane
I'm glad you did get my note, I think notes, or instant messages IM) are even a better way for us to communicate because we're discussing how we're dealing with a specific issue.
I like the IM better since we're not limited to how many letters we can write at a time, I hate going over my notes and cutting them down.
If that would be ok with you for us to chat about our lymphedema please let me know. If you'd prefer to do it on this website, that's also ok.
I do get those pins and needles in my leg when I first get up in the morning, then it goes away.
I'm having Gemzar alone, my oncologist wants to hold Avastin and other drugs for future use. I've already had carbo/taxol and Topotecan. He said I can expect to be on chemo the rest of my life, with no remission, i'm staged 4B epithelial.
I also find the lymphedema depressing, I handled the 2 surgeries, and 3 chemo drugs as necessary to deal with cancer, and hernia surgery as also necessary. The lymphedema is a ridiculous annoyance that was unexpected.
Be very careful with the wrapping you do, having your thighs get cold, or lose feeling is a sure sign the wrapping is too tight and cutting off blood flow.
Take care and have a good day,
Jane
Dear Jane,
I did get the note! Thank you so much for responding.I was very busy with grandchidren and had to wait for a quiet moment to reply.
I am still attempting to bandage, but I always cut my circulation off and I hate it.I also have had two debulking surgeries and two different chemos, and I really find this depressing.My thighs go quite numb,and I frequently experience tingling...needles and pins in my upper legs and knee area.
Have you been exhausted with the lymphedema? It is so difficult to know if I feel unwell because of the cancer or the lymphedema.
I am glad you are able to tolerate the gemzar because i think it is a good drug...my blood counts were terrible and i had to stop after 3 treatments.Are you having it with carbo?
Thank you again for corresponding..it is gratifying to know that there are other in the same predicament who will share their experience.
The Reid sleeve should be arriving soon and I am anxious to throw away those disgusting bandages. I will keep you informed.
Anne
p.s. I will consider that little tumour an imperfection! I much prefer that!
I did get the note! Thank you so much for responding.I was very busy with grandchidren and had to wait for a quiet moment to reply.
I am still attempting to bandage, but I always cut my circulation off and I hate it.I also have had two debulking surgeries and two different chemos, and I really find this depressing.My thighs go quite numb,and I frequently experience tingling...needles and pins in my upper legs and knee area.
Have you been exhausted with the lymphedema? It is so difficult to know if I feel unwell because of the cancer or the lymphedema.
I am glad you are able to tolerate the gemzar because i think it is a good drug...my blood counts were terrible and i had to stop after 3 treatments.Are you having it with carbo?
Thank you again for corresponding..it is gratifying to know that there are other in the same predicament who will share their experience.
The Reid sleeve should be arriving soon and I am anxious to throw away those disgusting bandages. I will keep you informed.
Anne
p.s. I will consider that little tumour an imperfection! I much prefer that!
Hi Anne.
I sent you a note, perhaps you didn't see it. The lymphedema started in my ankle, and would go down by morning. Then it progressed to include my leg to the knee, again being less swollen by morning. Now it's the entire leg and doesn't reduce in size at all.
I compliment you for being able to tolerate the bandages, for however long you're able to. I'll have to check out the Reid sleeve.
The therapist had put a sleeve on my leg, but I couldn't even tolerate that because the top kept rolling down on my thigh and making a tourniquet.
She had said that the wrapping take about 2 weeks to get used to, 2 WEEKS of not being able to move in bed, and having trouble walking and standing. I'm not a baby or whiny, it's just more than I can adjust to, I've dealt with 2 surgeries and 3 kinds of chemo but this is too much.
The new therapist showed me how to massage the lymph nodes under my arms, and in my pelvis, and how to breath to raise my abdomen. She said that there are lots lymph nodes there and we're preparing them to receive the lymph fluid in my leg. I can feel the one in my pelvis and it's the size of my thumb, that's the trouble maker.
So far the Gemzar has not brought the swelling down, and when I see my oncologist on Monday, we'll discuss it. I'm tolerating the Gemzar well and the only side effects are fatigue and feeling cold 2 days after treatments.
I hope that spot near your liver is what my doctor calls just an imperfection, I have one but he's not concerned since it hasn't changed in over a year.
Take care, let me know how that Reid sleeve works for you.
Jane
I sent you a note, perhaps you didn't see it. The lymphedema started in my ankle, and would go down by morning. Then it progressed to include my leg to the knee, again being less swollen by morning. Now it's the entire leg and doesn't reduce in size at all.
I compliment you for being able to tolerate the bandages, for however long you're able to. I'll have to check out the Reid sleeve.
The therapist had put a sleeve on my leg, but I couldn't even tolerate that because the top kept rolling down on my thigh and making a tourniquet.
She had said that the wrapping take about 2 weeks to get used to, 2 WEEKS of not being able to move in bed, and having trouble walking and standing. I'm not a baby or whiny, it's just more than I can adjust to, I've dealt with 2 surgeries and 3 kinds of chemo but this is too much.
The new therapist showed me how to massage the lymph nodes under my arms, and in my pelvis, and how to breath to raise my abdomen. She said that there are lots lymph nodes there and we're preparing them to receive the lymph fluid in my leg. I can feel the one in my pelvis and it's the size of my thumb, that's the trouble maker.
So far the Gemzar has not brought the swelling down, and when I see my oncologist on Monday, we'll discuss it. I'm tolerating the Gemzar well and the only side effects are fatigue and feeling cold 2 days after treatments.
I hope that spot near your liver is what my doctor calls just an imperfection, I have one but he's not concerned since it hasn't changed in over a year.
Take care, let me know how that Reid sleeve works for you.
Jane
Hi Jane...thanks for your reply.
How have you managed for 18 months with this miserable condition? How do you get around with so much swelling?
The wrapping is so uncomfortable that I end up ripping the bandages off in the middle of the night and have a difficult time sleeping.I have ordered a Reid sleeve to replace the night bandages, and will wear compression tights during the day.I can see that summer will be a challenge.
My ca125 is rising, but the ct scan shows no change in a very small tumour near my liver, so we are monitoring the situation closely.I know I will need more chemo in the near future.
Have you found anything that helps with the swelling?Have you noticed any change yet with the chemo?
I had gemzar for my first recurrence and found it difficult to tolerate, but it has given me twenty months of chemo free life.
Take care,
Anne
How have you managed for 18 months with this miserable condition? How do you get around with so much swelling?
The wrapping is so uncomfortable that I end up ripping the bandages off in the middle of the night and have a difficult time sleeping.I have ordered a Reid sleeve to replace the night bandages, and will wear compression tights during the day.I can see that summer will be a challenge.
My ca125 is rising, but the ct scan shows no change in a very small tumour near my liver, so we are monitoring the situation closely.I know I will need more chemo in the near future.
Have you found anything that helps with the swelling?Have you noticed any change yet with the chemo?
I had gemzar for my first recurrence and found it difficult to tolerate, but it has given me twenty months of chemo free life.
Take care,
Anne
Hi Anne,
Let me first say that was a horrible thing your doctor said to you. He should be ashamed of himself.
I was diagnosed with OVCA staged 4b in 2007 and I've had lymphedema for about 18 months. Mine started in my left ankle, progressed to my knee and now is all the way up to my pelvis. My right leg is double the size of my left leg now.
My cancer has relapsed in my lymph nodes, and my oncologist said that chemo is the answer for lymphedema. I'm on Gemzar, I had my 4th treatment and when the chemo reduces the lymph nodes, it will allow the lymph system to drain the lymph fluid out of my right leg.
I'm also having PT for my edema, but I couldn't tolerate the leg wrapping, I agree with you that it's primitive and was impossible to tolerate. I couldn't walk, or sleep or stand and had to remove it.
My oncologist said he only wants me to have the lymphedema massage therapy, not wrapping or a compression stocking.
I have no pain, but I understand that I must be careful not to bang, or bruise the leg for fear of cellulitis which would require antibiotics.
Have you relapsed, and are you on any chemo at this time?
Take care, let me know how you're doing.
Jane
Let me first say that was a horrible thing your doctor said to you. He should be ashamed of himself.
I was diagnosed with OVCA staged 4b in 2007 and I've had lymphedema for about 18 months. Mine started in my left ankle, progressed to my knee and now is all the way up to my pelvis. My right leg is double the size of my left leg now.
My cancer has relapsed in my lymph nodes, and my oncologist said that chemo is the answer for lymphedema. I'm on Gemzar, I had my 4th treatment and when the chemo reduces the lymph nodes, it will allow the lymph system to drain the lymph fluid out of my right leg.
I'm also having PT for my edema, but I couldn't tolerate the leg wrapping, I agree with you that it's primitive and was impossible to tolerate. I couldn't walk, or sleep or stand and had to remove it.
My oncologist said he only wants me to have the lymphedema massage therapy, not wrapping or a compression stocking.
I have no pain, but I understand that I must be careful not to bang, or bruise the leg for fear of cellulitis which would require antibiotics.
Have you relapsed, and are you on any chemo at this time?
Take care, let me know how you're doing.
Jane
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