A dilemma...
So here's the dilemma...do I do the manual lymphatic drainage massage? Those of you familiar with LE know that this manually pushes the lymph fluid through the lymph system. If I'm doing that, am I accelerating the spread of cancer? Or, because the MLD manually replaces what my system would normally be doing, does it matter?
I asked my LE physical therapist, she says there is no definitive study on this. And that the few studies that have been done on this are mixed...some say do the MLD massage and some say don't. I asked my onc, he said do whatever I need to do to manage the LE.
So I'm not sure what to do...
And here's an update...the open wound from the re-excision is slooooowwwly closing. It measures 2-4mm smaller each week, so I know that eventually it will close up and we'll be done. Xeloda and I are getting along pretty well...no mouth sores, minimal diarrhea, my palms and the soles of my feet are red and sometimes sore but not cracking (yes, I'm doing lots of lotion for this), and some tummy upset. I have a CT scan on the 16th to see if the Xeloda is working.
Thank you all for being the caring, supportive, wonderful people you are.
Hugs,
Linda
Comments
-
Linda I am very sorry that you have this dilemma
I will ask my lympedema therapist when I see her. She is very knowledgeable and experienced, well recognized in the lymphedema community. I do not have an answer or opinion right now, and will think about it and look up my notes and write back to you my "lymphedema professional opinion"
I am glad that Xeloda side effects are minimal and your wound is healing and getting better every day.
Sending positive thoughts and hugs,
New Flower0 -
Oh Linda I'm so sorry you
Oh Linda I'm so sorry you are going through this. It is some thing I have not even thought about... and a very good concern. I'm off to do some research and try to find some information. I'll be back. Kay.0 -
http://www.ericfreukes.com/fr
http://www.ericfreukes.com/freukesbenefits.html
This is what I found so far and she has a phone number and says you can call with any questions. She does address this subject. Hope this helps. I'll keep looking. Kay0 -
I don't know enough about lymphedema
But I just wanted to chime in to wish you continued strength as you proceed
with your treatment. I will be on pins and needles till I hear about your CT scan
on the 16th. I think of you often and send positive vibes your way. I really hope
for good results from the Xeloda. So glad to hear that your wound is healing.
BIIIG huge hug,
Ayse0 -
Love your way!!!aysemari said:I don't know enough about lymphedema
But I just wanted to chime in to wish you continued strength as you proceed
with your treatment. I will be on pins and needles till I hear about your CT scan
on the 16th. I think of you often and send positive vibes your way. I really hope
for good results from the Xeloda. So glad to hear that your wound is healing.
BIIIG huge hug,
Ayse
Hey Linda, I don't know the answer either i just wanted to say hi and let you know i'm glad to see your posting, how are the kids? keep us posted because what you learn will help all of us that are prone to lymphedema. ((hugs to you and the fam))) Mollyz0 -
Linda...mollyz said:Love your way!!!
Hey Linda, I don't know the answer either i just wanted to say hi and let you know i'm glad to see your posting, how are the kids? keep us posted because what you learn will help all of us that are prone to lymphedema. ((hugs to you and the fam))) Mollyz
I have had some lymphedema, in the breast ..gets rock hard....Haven't done anything for it....I, too, am on Xelda and have been for almost 4 months......due to recurrence in my lymph nodes...also in the nodes between the lungs and clavicle nodes...I have tolerated the Xelda really well! On 7 days, off 7 days...1500 mg in the am and 1500 mg 12 hours later....just this past week I was put on Gabapentin for severe neuropathy in my breasts...due to second round of rads....not only has it made me pain free but the lymphedema has disappeared.....strange..coincidence? Don't know....I have scans on the 28th....also to see if the Xeloda is working...praying hard for both of us, that it is:doing it's job....I'm triple negative, aren't you also? As far as the lymphedema massage, my radiation oncologist said..."leave it alone"...but mine again, was in the breast....I also use Aquaphor on my feet ever night....so far so good..
Wishing you the best possible out come with your scan...keep us posted!
Hugs, Nancy0 -
Linda I don't know theMAJW said:Linda...
I have had some lymphedema, in the breast ..gets rock hard....Haven't done anything for it....I, too, am on Xelda and have been for almost 4 months......due to recurrence in my lymph nodes...also in the nodes between the lungs and clavicle nodes...I have tolerated the Xelda really well! On 7 days, off 7 days...1500 mg in the am and 1500 mg 12 hours later....just this past week I was put on Gabapentin for severe neuropathy in my breasts...due to second round of rads....not only has it made me pain free but the lymphedema has disappeared.....strange..coincidence? Don't know....I have scans on the 28th....also to see if the Xeloda is working...praying hard for both of us, that it is:doing it's job....I'm triple negative, aren't you also? As far as the lymphedema massage, my radiation oncologist said..."leave it alone"...but mine again, was in the breast....I also use Aquaphor on my feet ever night....so far so good..
Wishing you the best possible out come with your scan...keep us posted!
Hugs, Nancy
Linda I don't know the answer either, but just wanted to say
hi and let you know I continue to send prayers for you.
Glad you are showing improvement with your wound.
Have you been able to work? If so I know it must be hard
on you. Take good care and keep us updated when you can.
Luv & hugs, Teresa0 -
Kay, thank you for thesmalldoggroomer said:
Kay, thank you for the links! Both sites indicate that the MLD is OK.
Hugs,
Linda0 -
Molly thanks formollyz said:Love your way!!!
Hey Linda, I don't know the answer either i just wanted to say hi and let you know i'm glad to see your posting, how are the kids? keep us posted because what you learn will help all of us that are prone to lymphedema. ((hugs to you and the fam))) Mollyz
Molly thanks for asking...the kids are great! Of course I'm biased, but I think they're pretty wonderful.
Hugs,
Linda0 -
Nancy, we have the sameMAJW said:Linda...
I have had some lymphedema, in the breast ..gets rock hard....Haven't done anything for it....I, too, am on Xelda and have been for almost 4 months......due to recurrence in my lymph nodes...also in the nodes between the lungs and clavicle nodes...I have tolerated the Xelda really well! On 7 days, off 7 days...1500 mg in the am and 1500 mg 12 hours later....just this past week I was put on Gabapentin for severe neuropathy in my breasts...due to second round of rads....not only has it made me pain free but the lymphedema has disappeared.....strange..coincidence? Don't know....I have scans on the 28th....also to see if the Xeloda is working...praying hard for both of us, that it is:doing it's job....I'm triple negative, aren't you also? As far as the lymphedema massage, my radiation oncologist said..."leave it alone"...but mine again, was in the breast....I also use Aquaphor on my feet ever night....so far so good..
Wishing you the best possible out come with your scan...keep us posted!
Hugs, Nancy
Nancy, we have the same dosage of Xeloda. But I'm on for two weeks, and off for one. Yes, I'm triple neg too (and IBC). I'm using the Aquaphor at night, and I also use the Daily Replenishing Lotion by Eucerin during the day (I used both during rads). Thanks for all the prayers, and they're coming right back at you.
Hugs,
Linda0 -
Nancy, we have the sameMAJW said:Linda...
I have had some lymphedema, in the breast ..gets rock hard....Haven't done anything for it....I, too, am on Xelda and have been for almost 4 months......due to recurrence in my lymph nodes...also in the nodes between the lungs and clavicle nodes...I have tolerated the Xelda really well! On 7 days, off 7 days...1500 mg in the am and 1500 mg 12 hours later....just this past week I was put on Gabapentin for severe neuropathy in my breasts...due to second round of rads....not only has it made me pain free but the lymphedema has disappeared.....strange..coincidence? Don't know....I have scans on the 28th....also to see if the Xeloda is working...praying hard for both of us, that it is:doing it's job....I'm triple negative, aren't you also? As far as the lymphedema massage, my radiation oncologist said..."leave it alone"...but mine again, was in the breast....I also use Aquaphor on my feet ever night....so far so good..
Wishing you the best possible out come with your scan...keep us posted!
Hugs, Nancy
Oops!0 -
Awwww, thank you Ayse!aysemari said:I don't know enough about lymphedema
But I just wanted to chime in to wish you continued strength as you proceed
with your treatment. I will be on pins and needles till I hear about your CT scan
on the 16th. I think of you often and send positive vibes your way. I really hope
for good results from the Xeloda. So glad to hear that your wound is healing.
BIIIG huge hug,
Ayse
Awwww, thank you Ayse! How's that man of yours?
Hugs,
Linda0 -
Linda,poplolly said:I'm praying for you Linda.
I'm praying for you Linda. I'm so sorry you're going through this. I took xeloda too. Time will tell whether it did it's job.
Hang in there
Hugs Judy
You are often in my
Linda,
You are often in my thoughts and prayers. Like the others, I'll be waiting to hear the (great) results from your upcoming scan.
Deborah0 -
I am so happy when I see you
I am so happy when I see you post! That is great news that the wound is healing! I know you must be relieved. Not sure about the MLD, but my gut says to do it if it helps. It looks like the info posted by others is agreeing with that? (((HUGS))) and prayers coming your way. And the pink bus is on call for the 16th!0 -
glad to see your postCypressCynthia said:I am so happy when I see you
I am so happy when I see you post! That is great news that the wound is healing! I know you must be relieved. Not sure about the MLD, but my gut says to do it if it helps. It looks like the info posted by others is agreeing with that? (((HUGS))) and prayers coming your way. And the pink bus is on call for the 16th!
I haven;t been on here lately but wanted to check in and see how everyone was doing. Hoping for good results for your scan!
Like you and Nancy, I;m continuing on the Xeloda - I;m one week on, one week off, 1500 mg twice a day. No side effects except some fatigue.
My scan is Dec 29 and we will see if Xeloda is doing its work.
Laura0 -
Can only offer you prayers
Dear Linda
I have no experience nor knowledge in the area that you are asking for information. All I can give you is love, support, and prayers.
Question: Would Vitamin C and Zinc help you heal with the open wound? Ask your doctor!
Lots of Hugs,
Janelle0 -
Sending prayers and goodaysemari said:I don't know enough about lymphedema
But I just wanted to chime in to wish you continued strength as you proceed
with your treatment. I will be on pins and needles till I hear about your CT scan
on the 16th. I think of you often and send positive vibes your way. I really hope
for good results from the Xeloda. So glad to hear that your wound is healing.
BIIIG huge hug,
Ayse
Sending prayers and good luck to you, and, especially on the 16th!
Sue
0
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