Lymphedema From Chemo Alone - No Surgery, No Radiation

So the statics say 1 in 3 may people develop Lymphedema after surgery to remove lymph nodes or after radiation.  I am here to say it is possible to get Lymphedema just from chemo alone.  My oncologist says in the 35 years he has been in practice he has never seen it before.  Yet here I am.

My cancer story: I was diagnosed with HER2+ breast cancer on May 30, 2012.  I had a very tiny mass on my left breast that had spread to a lymph node on the left side of my neck.  The neck mass was found first and began growing rapidly.  I started chemo on June 20th. Carboplatin, Taxotere along with Herception.  After my FIRST treatment the mass/lumps were responding and disappearing.  By the end of my treatment, they were gone completely as well as any traces, so completely that my PET scan was completely negative.  I had no mass or lump to remove or radiate.  I thank God for this miracle healing, along with the prayers of so many.  

My Lymphedema:  Somewhere around my 3rd chemo treatment I began to feel a pulling sensation in my left upper arm when reaching up.  I would notice it and then it would go away, then return.  So that would be early August of 2012. I never mentioned it to my doctor, I didn't know it was related.  Towards the end of September 2012, I noticed my left forearm swelling.  I told the doctor, but he said it was probably a side effect of the Herceptin and wasn't concerned. Weekly it worsened and eventually started to swell in my hand and fingers.  Upon weekly visits for my treatments, he still didn't seem concerned.  On discussing it with his nurse, she told me there was a Lymphedema Clinic attached to the hospital and I should ask the doctor for a referral.  Well the doctor was on vacation that week and a fill in doctor saw me and did the referral.  She said that she believed that the chemo had "fried" my lymph nodes.  The chemo had been so aggressive targeting my cancer that it just destroyed the node/nodes as well. 

Well I finally began treatment with a certified LE therapist the first week of November and continued for six weeks.  The usual gruelling schedule of 4-5 sessions a week and around the clock bandaging. I was very upset, and devastated to find that this may, and most likely will, be forever.  And no cure. 

So at this time I have been out of therapy since December 6th. On my own, accountable for any swelling and in charge of my condition.  I began reading a lot on the web.  I decided to start my walking routine again, which I had quit during chemo.  Additionally I looked into dry brushing and added that to my morning routine. Then I researched the best exercise for lymphedema and invested in a good rebounder.  So my morning routine is this:  Dry brushing/shower/MLD/sleeve-glove/rebounding, then breakfast.  During the day I walk, do another rebounding session, as well as a rebounding session at night and then bandaging.

I hope that I will be able to keep up this routine, as it seems to be helping already and I have only been doing it about 2 weeks.  My overall swelling seems down a few percentages and when I do swell, it seems not as much as before.

My oncologist still doesn't get it.  He is a fantastic oncologist, but not so good at lymphedema.  He is constantly commenting on my hand/arm that, "they look good, not much swelling at all".  He doesn't get that I am killing myself to achieve this!  Holy cow!  But anyway.  I am thankful for the LE Clinic and what I learned there.  And I can't blame my doctor too much for not warning me of the side effect lymphedema, since it is not usual without surgery or radiation. 

So my prayer is that I will be one of those people that after a year or so, it goes into remission and I won't have to wear this horrible glove forever.  I am doing everything I possibly can on my part to help along my chances.

Please watch your arms and legs carefully if you have cancer involved lymph nodes and are on chemo. And relay to your doctor it can happen. As you probably know, the sooner you are diagnosed the better your chances.

God's blessing upon you all,

Victoria