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Lymphedema treatment with Active Cancer

SIROD's picture
SIROD
Posts: 2201
Joined: Jun 2010

My primary doc has referred me to the lymphedema clinic.  I requested the referral.   About a month or so ago I did finally noticed my effected arm was much larger than the other.  It's been 18 1/2 years since the 1st lymph node dissection on level 1 nodes and 14 years since  the 2nd lymph node dissection, removing all of level 2 and some of level 3 nodes. In spite of having 4 bouts of cellulitis, a full thickness tear of the supraspinatus tendon in the rotator cuff and chronic bursitis, I had considered myself very lucky to not have developed the condition.  I never wore a sleeve when I've flown over the years and some were very long flights.  Time has ran out.

The physical therapist told me this morning that they don't work on arms when there is active cancer.  I was explaining that it would be hard for me to go daily at the moment but perhaps when the retirement issue is straighten out.  That is when I heard her say that working on an arm could spread the cancer.  In all these years, I never heard this bit of information.  Have any of you?

With all that happened Monday, I can't remember if I told my oncologist that I was seeking treatment for my arm or not.

Sleeves are issued after they work on decreasing the fluid in the arm.  Made a lot sense to me.  If they can't work on it for a while and  I have no end date for the upcoming chemo treatment, should I start by keeping my arm elevated for several hours every night?  After leaving the hospital with an infection, I had to elevate the arm for about 5 days.  I used a clothed tree and scarves to tie my arm up. 

I should have paid closer attention, I was so vigilant in the early years and after the 2nd lymph node dissection.  When nothing happen, I just forgot about it.  The arm does hurt some but it's not excrutiating pain and more than likely my patch might be camouflaging the pain.

If you have the conditon or know something about this, I would like to hear from you?

Count down for the port-a-cath being put in today.  How I wish it was all over and done.

Best to you all,

Doris

Josie21
Posts: 359
Joined: Nov 2012

Hi Doris.

I wish I could give you some helpful information, but lymphedema is not a subject I am that familiar with.  I did however want to send you hugs and prayers for your port-a-cath procedure today.  I am so sorry you have to go through yet another round of treatments.  Wishing you the best.

Hugs,

Ginny

SIROD's picture
SIROD
Posts: 2201
Joined: Jun 2010

Thank you Josie,

I have been trying to distract myself but it's time for me get ready.  Not looking forward to it, but I will be ok.  

Getting use to the idea of treatment also.  I just never expected my answer, it just came out, so it actually surprise me.  The alternative she offered wasn't appealing and there I was saying " ok, I'll take it".  Almost like being at an auction! LOL!  Smile

 

Until later,

Doris

cinnamonsmile
Posts: 1049
Joined: Dec 2010

Doris, I am so sorry you have LE now. It is a serious condition, not only does it make a person suseptible to cellutlitis, the swelling can damage tissues and organs beneath the skin.

breastcancer.org has some women that are experts on LE. One named, Kira, is a physical therapist who has LE herself. I have learned so much for them on the Lymphedema Forum on there.

Besides sleeves, there is skin care, MLD, I do deep breathing through the belly at least five times a day (more is better), I lay down with my arms above my head 45 minutes a day (or until I fall asleep, lol). From now on, no IVS, no needles and no BPS in the LE arm. It is standard practice no to have that done in ANY arm that had lymph nodes removed. That goes for the hand and fingers as well.

As I have just learned by a horrible experience by a bad surgeon, I will now keep a copy of my doctor's diagnoses of LE, and when I sign medical documents for treatments (like surgery) I will specify no IVs, needles, or bps in the arms or hands unless it means life or death for me. IVS in the feet or neck work just fine. It may not be the most convenient for the surgical staff, but my health is more important than that.

There are some really good websites out there:

stepup-speakout.org

http://www.cancer.gov/cancertopics/pdq/supportivecare/lymphedema/healthprofessional/page1

www.lymphnet.org

http://www.cancer.org/cancer/breastcancer/overviewguide/breast-cancer-overview-after-lymphedema

http://www.breastcancer.org/treatment/lymphedema

I know what activities aggravate my LE (and my PMPS), so I am learning how to stagger activites and modify how I do them. I have pain associated with my LE as well.

Some women  have stated that they don't let their LE run their lives. They do what they want.  I have too much pain involved with mine, as well as swelling so like I said,like many others, I need to be careful not to aggravate things. I have not asked my dr. but I assume the greater the swelling, the greater chance of damaging tissues and organs under the skin. I will have to make a note and ask.

I put out a question on breastcancer.org if treating LE with active cancer can make it spread. Hopefully, the ladies will be getting back soon so I can help you out.

I can't remember at the moment what else I do for my LE on a daily basis... but I have been told that drinking lots of fluids can help, reduce salt intake, and exercise (exercise that doesn't increase one's LE or it defeats the purpose).

I am learning that there is so much ambiguity around LE and misconceptions around it with medical professionals, that we really need to keep on top of things ourselves.

I wish you the best of luck with you LE and hope that it doesn't get any worse. Like I said, there is lots of good information on breastcancer.org's forum called Lymphedema.

New Flower
Posts: 4101
Joined: Aug 2009

I have been undergoing lymphedema treatment with active cancer

SIROD's picture
SIROD
Posts: 2201
Joined: Jun 2010

I had gone to some of the web pages that you gave Robert the other day in your post to him.  

I was treated very nicely yesterday at the hospital that put in my port-a-cath.  I was very fortunate that the RN knew a lot about lymphedema and put a pink bracelet on my wrist immediately,  No one touched my arm and they were very careful with it in the OR.  When I have been a patient the various hospitals where I live, they have always treated my arm with the upmost care.  I have been very lucky in that way.  Some have put a sign over my bed about no blood pressure, no needles, on my left arm.  Some of course, could not read and I would point to the sign and they quickly would go around the bed to my right side.  Sometimes, it would be my leg they use if I had an IV in my arm.  I have been very lucky.

I will have more questions for you later.  I'be been on the computer to long today.

Best as always,

Doris

 

McMarty's picture
McMarty
Posts: 200
Joined: Nov 2012

I was refused a massage once on a cruise ship because they don't do people with active cancer.  Too much risk of increased circulation spreading the cancer or fracturing a weak bone.  TOTAL surprise to me!!  I aske my dry when I got home - one Onc said oh yeah massage is risky, the other Onc said massage if fine!  I'd say I wish they told you that before I left but since I would have been told 2 different things, I would have been in the same boat I guess.  For sure I'd have been on the same boat cause that's the only one I had a ticket to get on!

Makes me wonder how the active cancer enjoyed its scuba diving!

McMarty's picture
McMarty
Posts: 200
Joined: Nov 2012

I was refused a massage once on a cruise ship because they don't do people with active cancer.  Too much risk of increased circulation spreading the cancer or fracturing a weak bone.  TOTAL surprise to me!!  I aske my dry when I got home - one Onc said oh yeah massage is risky, the other Onc said massage if fine!  I'd say I wish they told you that before I left but since I would have been told 2 different things, I would have been in the same boat I guess.  For sure I'd have been on the same boat cause that's the only one I had a ticket to get on!

Makes me wonder how the active cancer enjoyed its scuba diving!

CypressCynthia's picture
CypressCynthia
Posts: 4015
Joined: Oct 2009

"Unfortunately, it is a common myth that massage therapy, by increasing overall circulation, could contribute to the metastasis or spread of cancer. This myth has finally been questioned, thought through, and overturned in the literature in the last ten years or so.

It has been overturned for two reasons. The first is that it's not clear that massage therapy has a very significant circulatory effect. Instead, its effect may be more mediated by neuroendocrine and other responses. Secondly, and most compelling reason the myth has been overturned, is that people in cancer treatment are rarely restricted from exercise unless there is some medical risk of bone fracture, etc.

Exercise and hot showers would confer the same, if not greater, risks than massage therapy if it were true that circulation is the only thing causing metastasis. But in fact, metastasis is a very complex process. One person in one of my classes summarized the argument against that old myth in just two words—Lance Armstrong. In fact, exercise is encouraged where possible for people with cancer for its health-promoting effects, and it much profoundly more circulatory than any hour-long session of massage therapy."

http://www.breastcancer.org/treatment/comp_med/ask_expert/2005_03/question_13

SIROD's picture
SIROD
Posts: 2201
Joined: Jun 2010

Thank you CC.  I have an answer for her.  I don't know when I can start but I didn't see how my cells in my lungs, ribs and etc had anything to do with my arm.  It didn't make sense to me.

I have never been a buyer into Lance Armstrong.  Testicular cancer is very curable even when it has metastasize.  Lance wasn't never in the danger he protrayed.  A master of deceitfulness with his cancer and his cycling.  I had to admire him after he won all those races.  I found it hard to believe that a person who has had cancer would abuse drugs.  Was I wrong!  I have known many men with testicular cancer and haven't yet known one to die from the disease.  Of course, they all could have been just lucky.  I attended a talk many years ago where the oncologist stated, "if you have testicular cancer that has metastasize, I can cure you"  Any other cancer, I can't.

I probably going to start elevating my arm some and see if that helps.  I have to much on my plate at the moment working, chemo and just keeping house and all the everyday stuff that each of us has to do to live.  I want to talk to them about a sleeve in a few weeks or what else they can suggest until I retire.  I know working (and being fatigue) isn't going to allow me to go to a clinic for 1 1/2 hours after work.  It won't happen.

Thank you again for this article and for telling me not to treat my pills like they were "M & M" and swallowing them by the handful.

I can't tell you how much I appreciate both,

Doris

 

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Doris,  I have LE in the left arm and trunk.  I do almost nothing for the LE and I'm grateful it isn't too bad.  I'm not sure what I would do if it worsened....

Here's my logic...my mets are mostly in my mediastinal (sp?) lymph nodes.  The way I see it, MLD is designed to circulate lymph fluid away from my left side thru the rest of my body.  According to the few studies I've read, it is inconclusive whether this would spread my cancer.  I CHOSE not to take that risk.

I do want to point out that MLD (designed to move lymph fluid) is very different from the kind of massage you would get at a spa or on a cruise ship.  I do go for regular reflexology/full body massages...they are extremely different.

I do a few things for my arm...watch my salt intake (BP demands I do that anyway), elevate my arm while driving (on the steering wheel) or watching tv (on the arm of the couch).  Shoulder height is usually good for elevation.  I do some very light exercises.   Raise my arm and alternate open hand with clenched fist.  I do this about 20 times twice a day.  Or raise my arm and rotate my wrist so my palm then the back of my hand faces me, again about 20 times 2x a day.  I will do these more if my LE is bad.  The way I see it, that fluid is supposed to move around.  When it stagnates is when I have pain, when I do that little bit I don't have the pain.  I have never had cellulitis or other LE issues (I consider myself lucky).

Doris, I am so sorry you have to deal with LE on top of everything else and after all these years.  Please know that I am thinking of you, and I hope your new treatment keeps you going for another 18 years or more.  I'm also glad you're retiring soon, you deserve that break.

Hugs,

Linda

P.S.  I love the idea of your contraption to elevate your arm...very clever.  Just be careful to not elevate too high, or too long...of course check with your doc on that.

 

 

SIROD's picture
SIROD
Posts: 2201
Joined: Jun 2010

Thanks Linda.  I can do those simple exercise and don't see how they can hurt.  My primary doctor ordered the clinic and she knew about the spread in the left lung.  I have to much on my plate while still working.  First things first.

I never though I would develop it after all these years though I did understand that lymphedema had not time limit.

Those simple exercise will have to do for now.   The clinic said that my primary doc's orders are good with them for six months.  I will the oncologist prior to treatment and will ask her.  I just don't believe that cancer cells don't move around in that manner.

 

Thanks again,

 

Doris

CypressCynthia's picture
CypressCynthia
Posts: 4015
Joined: Oct 2009

I agree about Lance Armstrong.  He is a creep.

Massage spreading cancer sounds like a myth though.  It just doesn't make much sense to me.  If moving muscles around spread cancer, none of us would be allowed to exercise.

Lymphedema treatments I can't speak about as I admit I know little about them.  My sisters and I have all been blessed in not having ever had lymphedema.  Knock on wood!

The pill popping warning was for myself as well as all of us here.  I can't tell you how that shook me up! Very scary!

I am so sorry that you are dealing with all of this.  Please let me know how your appointment goes.  Sending big hugs and prayers!

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

Hi Doris,

I have bi-lateral lymphedema and it's primarily in my fingers and my hand.  My left side is my cancer side and it's worse on that side.  

I do what several of these ladies have suggested.

1)  Elevation is a good thing to do.  Elevate your arm whenever you can.

2)  Drink lots of water.  Lymph fluid is full of protein and water helps flush it out.  It won't make the swelling worse it will help move it along.  

3)  As someone has already mentioned, salt makes my LE worse big time.  It doesn't have that effect on everyone but it definitely does on me.  Also, anything with sodium nitrates (lunch meat, bacon, etc.,) all of that makes my swelling worse. 

4)  Weather and barometric pressure changes.  At the onset, I had lots of pain with the LE.  Now, it usually only hurts when there is a drop in barometric pressure.  Not much we can do about it (you can wrap if you know how that will help but definitely wait until a certified LE therapist shows you how) but it is helpful to know the why.

5)  Cardio exercise helps move the fluid along as well.  I don't know if you're able to get out and walk some ... but any kind of exercise ... will help move the fluid along.  (For me, since it's in my hands ... when I walk for exercise, I can't walk with my arms down to my sides, I walk with them at 90 degree angles).  Again, it doesn't have to be fast, it doesn't have to be much but a little movement can help.

6)  I do some stretches that help.  I do fist pumps, deep breathing, and reaching my arms over my head ... very slowly.  There is a video that I've found very helpful ... I only do the very beginning, the Lymphatic Opening part ... I do it almost every day and it helps move the fluid along as well.  The woman who created it has lymphedema.  It's called "The Lebed Method."  I learned about it on BCO.  It's been really helpful for me.  Here is a link to what I have:  http://www.amazon.com/Healing-Through-Therapeutic-Exercise-Movement/dp/B000HWY60G

 

7)  I agree too with has been said about massage.  Lymphatic Drainage is very different than regular massage.  It's so gentle and so soft.  But I don't know about the progression and I totally understand you're not wanting to do it until you know for sure about the mets.  

 

One of the most frustrating things for me, in dealing with the Lymphedema, is that what works for one won't necessarily work for you.  But the water, the elevation of the arm, the watching of your salt intake, the deep breathing are all things that seem to work for most.  

I'm sorry you have to deal with this.

 

 

SIROD's picture
SIROD
Posts: 2201
Joined: Jun 2010

Hi Dawn,,

Thank you for replying.  I don't use salt and limit the products with sodium nitrates.  I  haven't used salt in years since I was diagnosed with hypertention.  I am going to drink more water as I have been warned by the oncologist to double my water intake to flush my kidneys out.  I do drink water but I suppose I could do more and will.

Walking is a problem as I have PTTD (posterior tibial tendonitis dysfunction) in my right ankle.  I wear a brace with my shoe and now use a cane for support.  The cure is to fuse my ankle with no walking on it for 8 weeks.  I was unable to figure out how that could be accomplish without the use of my left arm on crutches.  I don't want any more surgeries, so I have sort of learned to live with it.   I have knee problems.  I have osteoarthritis and are painfu.  I've blamed the hormonal drug thereapies over the years for some of the joint problems.  There are times, my knees won't work and I have to lean on furniture until the pain moves away.  I use to walk a lot and it was my favorite thing to do.  I use to go for water aerobics twice a week and dancing on weekends.  Hard to believe now how little I do from what I use to do.  Perhaps that is why I developed lymphedema.

It's been kind of a double whammy for me, learning that the port was needed, chemo this week and figuring now where I will go for with LE business.  I have written down the video information.

Thanks you for the tips.

Best to you,

Doris 

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

I'm sorry about the double whammy.  Yell  No words just know I'm sorry.

 

If you could get into a pool, that would be fabulous for LE.  The water pressure from all sides can help reduce swelling.  Heat is a huge flare for me and last summer I would go to a local indoor pool at a community college and just walk around in the water, didn't even swim.  Just walked back and forth for about twenty minutes.  But even if you just get in and stand in water up to your shoulders ... just stand ... the water pressure can reduce the swelling. 

You don't want to get in a hot tube, however.  That can just make the swelling worse.  

Peace to you.

New Flower
Posts: 4101
Joined: Aug 2009

Hello Lymphedema Ladies, 

Very good advices and tips for Doris.

As you probably know I am having both conditions, lymphedema and cancer in my bones. When I was diagnosed with stage IV back in June, I asked Radiologist (UCLA professor) who read my bone scan about lymphedema massage since the cancer is on the way to trunk area, he answer was not a problem. Lymphedema massage is a surface massage, , does not deep and not suppose to move any cells. Of course ideally you and your therapist need to avoid areas where the cancer sits. For you Doris, I would avoid chest area, and direct liquid to the trunk area on the affected arm side. You arm, neck and shoulder are good enough to do mannual drainage and wrappingwith bandages. It is hard to coordinate a full-time job, Chemo treatment and lymphedema visit, however you can start doing simple things at home which have been suggested by pink sisters. 

As far as a compression sleeve, in my opinion you need to get one now even before you will be able to reduce swelling. Please do not wait 3 months until retirement to get a sleeve. As you are going through Chemo both steroids and taxanes (Taxol) can cause additional sweeling, therefore sleeve will help you to mainaine current conditions and size. while sleeve will cost money,  it will prevent you from getting bigger. Hopefully a good fitter wil measure you and suggest a standard sleeve appropriate for your size.

I will send you arm exercises for lyphedema for patients with limited mobility. If anybody else is interested, PM me, I will try my best. I love swimming, Pool is very helpful and water excercises, however you can breathe while sitting in the chair, rolllng your shoulders forward,up, back and  down. 

My experience: I have stopped lymphedema treatment for the first 6 weeks after MBC diagnosis, because it was too much to deal with everything. Then I resumed it , making my Therapist aware about my situation, even showed her my PET/CT report to help us to avoid  specific areas. I hope for everyone to find a good therapist who is willing to accomodate patient's conditions, providing relif and help in very difficult situations.

My lymphedema is very painful, I had to take care of it. I am wearing a compression sleeve and glove now all the time,, I also have a night sleeve to slee in. I cannot wera sleeveless clothes at the office, parties, holidays. It is sounds silly, however it is a big challenge in the business situation. Well, I know there are worst things than lymphedema , who cares about small stuff like ?

 Hugs to all

SIROD's picture
SIROD
Posts: 2201
Joined: Jun 2010

Hi,

 

I have sent you a private message.  I won't be waiting 3 months until I am retired for my arm.  I plan on going as soon as I know how I react to Taxol.  My arm has been always treated by me with total respect as I knew that lymphedema is a serious condition.  It can be controlled and I plan on having the information, and sleeves they can give me.

What I wonder is why didn't the young lady know this stuff before calling me.

I will find out though and in the mean time some of the exercise and recommendations here I am going to start working on.

 

Thanks,

 

Doris

SIROD's picture
SIROD
Posts: 2201
Joined: Jun 2010

 

I had been going to the pool at the recommendation of my rheumatologist.  I have fibromyalgia which he diagnosed within 10 minutes after not one of my doctors were able to help me for over a year.  Fibromyalgia often goes along with sleep apnea (which I have) an autoimmune problems like my uveitis, inverse psoriasis.  The pool was wonderful in relieving stress and I looked forward to going every time.

 

In 2008, I developed a tear duct strep infection.  The anti bionics that I tried the previous year for the other eye when having this infection, didn't work.  The eye doctors lanced it several times and that is with giving Novocaine near the duct.  It felt like bees stinging you.  I finally said, no shots, just lance it which hurt a lot less.  However my problem was that I had a stone just like a kidney stone but it was in the lacrimal sac in the tear duct.   I went to a specialist 3 hours from my home and he performed a DCR (dacryocystorhinostomy).  It was worth it.

 

A young girl asked for information on infections and told me she acquired her staph infection at the local pool (same pool I used) about the same time frame.  I began to wonder if my tear duct infection had been caused by the pool.  I did wear goggles as requested by my uveitis specialist.  Since that time, I haven't been near the pool.  

 

I have read that Taxol which is what I will be using on Wednesday sometimes causes tear duct infections.  The postings was on this discussion board and on another one.  My oncology nurse said she never seen anyone with a tear duct infection but she is very young and it could be that she hasn't.  This is why I hesitate in going back to the pool.  I can't afford another tear duct infection as much as I liked the pool for exercise and for just plain fun.  I am not courting disaster.  In fact it was at the same time I was going through this acute infection that they ordered a ct scan on my lungs.  I waited until the most pressing of problems were taking care of before having the ct scan which of course resulted in my 3rd recurrence.

 

I like what I've been reading from you and the others and plan on doing those exercise, inform the lady when she calls back on Monday, that we can proceed after I how I am responding on Taxol, and all those other problems.  I plan on following just what you ladies have suggested and certainly starting more water drinking.

 

Thank you all,

 

Best,

 

Doris

 

New Flower
Posts: 4101
Joined: Aug 2009

please everyone be careful with public pools while undergoing Chemo treatment. Make sure your immune system is not compromised

if you have a port it is a challenge

hugs

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