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Any advice about lymphedema?
Buddy65
42 Posts
Hi, I am hoping that I can get some advice or information about lymphedema.

I had 8 weekly cycles of taxol and now herceptin/perjata for life. About halfway through my chemo treatments my left arm started to swell ... below my elbow. Nothing major but the chemo nurse was a bit concerned so I was sent for an ultrasound to determine if it was a blocked vein ... which it was not.

It was quite itchy and i would scratch it and get little sores on it .... not pretty. It has not improved and my oncologist said it is from the chemo. I do not agree because why in just one arm. It is also the same side as my breast cancer. Since I was diagnosed right away with stage 4 with liver mets I am not getting a mastectomy or any surgery. However my lymph node under my arm was quite large but is now back to normal.

I think it is lymphedema and when I said that to my oncologist she just gave me a list of places offering massages.

My questions are: have you had lymphedema and if yes how did you treat it? Did you wear compression items or have massages or do something else? Also did you experience itchiness?

Thanks for any input
6 Replies
DMT
23 Posts
Hi @Buddy65,
I developed mild lymphedema about 6 months post surgery. Mild swelling in my upper arm and I think on the side of my back just behind my armpit and pain but no itching. I told my GP about it, her response was “Do you want a sleeve?”. I said “Yes”, so she gave me a prescription. I was pretty much on my own after that. I asked my oncologist if there are any lymphedema specialists and he said “ No, there’s no money in it”. He did say there are some therapists around but you have to do your own digging to find them. Start at canadalymph.ca. I found a physiotherapist in Nanaimo that specializes in cancer patients and lymphedema. I went to see her twice to get some guidance and can go back if I need to. A friend of mine has very severe lymphedema and she goes to a physiotherapist at the hospital when she needs extra help to reduce the swelling. They put her arm in a compression machine for an hour. I wear a sleeve every day to manage the pain, sometimes I wear a gauntlet on my hand as well. I like the patterned ones from Lymphedivas.com , my friend has to have hers custom made. Get a prescription from your GP and then it is covered by your medical (depends where you live or on your extended medical if you have it). At the very least save all your receipts as they are considered a medical deduction for your income tax.
Hope this helps a bit.
ashcon
1817 Posts
Buddy65
I'm sorry to hear you are experiencing this, but I'm glad that a blood clot or blocked vein was ruled out.
I developed lymphedema about one month after my BC treatments (2 surgeries, chemo, radiation). It's not a bad case, but I knew the importance of getting ahead of it early. If you do have lymphedema, it's easier to control with daily practices and interventions than to try to recover from a case that has gotten bad.
I know you said you did not have surgery, but did you have radiation in addition to your chemo? That in addition to other risk factors, may be a contributing factor to developing lymphedema.

DMT‍ has suggested a good resource. In Ontario, you can also check out Lymphedema Association of Ontario (LAO)
If you can get in to see a Lymphedema Specialist or CDT Therapist, that will be a crucial first step for you. In the LAO link I provided, there is a list through the link on right hand side of page. Therapists can not only provide you with some treatments (eg massage), but they are the only ones who can complete the required paperwork to diagnose lymphedema, thus make you eligible to get a doctor's prescription for compression garments, if you go that route. They are also the ones to complete the paperwork for ADP (Financial Assistance towards the cost of compression garments.)

I do wear a sleeve everyday, but the one thing I learned on this journey is that wearing a sleeve alone is not enough. My therapist showed me how to do my own lymph massage. You can find some videos on YouTube, or check out this collection, courtesy of Lymphedivas. Lymphedema Self Massage . I have also recently bought a Fitness Trampoline (Rebounder) which I've noticed has been amazing for getting the lymph moving. And when covid is not a factor, I paddle on a dragon boat team of breast cancer survivors. This activity is proven to help with lymphedema.

Once you get a handle on what you're dealing with, it's fairly straight forward to manage lymphedema, with the right information in hand. Don't hesitate to reach out if I can help with any other tips! I wish you health and healing. Living your life as fully as you can is so important, despite having lymphedema or stage 4!
MCoaster
416 Posts
Buddy65

I personally was very relieved to find this site after a bilateral mastectomy for DCIS in 2019. ashcon‍ was an absolute sanity saver as she is very knowledgeable about lymphedema. (thank you ashcon). It appears that there are not many resources generally available and as with many resources much depends on where you live. UTube has many exercise and massage videos and as a visual learner that is where I go. Making sure that you only use reputable sites is very important of course. Because I live in a ferry dependant area I was relieved when someone on this site knew of a local registered massage therapist who was qualified to work on lymph drainage.

Keep doing the exercises and remember to do the deep breathing exercises before you start and after. It is important to use the proper sequence to make sure the lymph flows in the right direction.

Happy to answer any questions.

Best wishes.

MCoaster

Glad to hear about the rebounder ashcon. Did you get the one with a handle? How is your downstairs resident doing???

Buddy65
42 Posts
Thank you so much for all the information
MCoaster
ashcon
DMT

I will definitely follow the advise.

ashcon‍ I am wondering where you paddle and if you have any info you could share with me. I am in Ontario ... close to Port Union/West Rouge and not too far from the Toronto Beach ... either area I could go to if it is available. Although, I am sure there will probably still be COVID restrictions. I would love to do that after spending so many years canoeing and kayaking I think I could do it!! Thank you.
DoubleD
21 Posts
Hi Buddy65‍ ,

I have lymphoma from post surgary in my right breast, trunk and it runs down my right arm.
yes yes yes there are things you can do with out spending money on a massage therapist.
I agree a compression sleeve and a hand glove my be helpfull.
you can do self massage to help you lymph system to move fluid. Your lymph system is just under the surface of your skin. So you do light brushing of the skin to help the fluid move.
go onto Princes Margaret hospitals website. Look for Lymphoma they have information that will show you how to do it.
I use to get itchy rashes that would blister too from chemo. Try putting calamine lotion on or there is also a benadryl topical spray you can use to help stop the itiching.
I would scratch at night in my sleep so I would cover the itichy area so I did not scratch it open.
Just another thought. Do you change up arms for getting chemo? My arm would also swell somtimes it was not lymphedema it was a reaction from the chemo.
ya got to love Chemo. The gift that just keeps giving.
DoubleD
Buddy65
42 Posts
Thank you.
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