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Lymphedema post mastectomy - needles/blood pressure in affected arm

Lymphedema post mastectomy - needles/blood pressure in affected arm

Posted by Scarletkate on Jun 16, 2020 10:16 am

Good Morning,
I am 9 months post L mastectomy.  I have slight lymphedema in my L arm. I have rheumatoid arthritis as well and will be going for my first post-surgery biologic infusion today.
I am waiting for a call back from the nurse, however, in the meantime, I thought I'd see if anyone had any experience with this.  Based on past infusions (which I've always had in my left arm) they infuse in one arm and do blood pressure checks in the other.  I understand however that if I have lymphedema in the left arm that they should neither infuse in that arm or take my blood pressure on that arm.  (This will make it interesting because they need to do both....)  Have others been advised to not have needles in the affected arm or have blood pressure taken on it?  Thank you in advance for any information you could provide.  

Re: Lymphedema post mastectomy - needles/blood pressure in affected arm

Posted by Essjay on Jun 16, 2020 9:04 pm

Hi Scarletkate‍ I had a lumpectomy on my left side 20 months ago and I was advised to have blood draws and blood pressure taken on right. The blood draws aren't too critical because the time flow is cut off is short, but definitely no blood pressure on that side. I just offer my right each time...
Also I was advised to avoid carrying a purse on my left shoulder. I use a cross body purse on my right shoulder, and if I wear a rucksack hiking I always make sure its balanced.

Are you having treatment for your lymphedema?
Triple Negative Breast Cancer survivor since July 2018

Re: Lymphedema post mastectomy - needles/blood pressure in affected arm

Posted by WarriorWoman on Aug 3, 2020 12:32 am

I don't let anyone do anything to my right arm where I have been presenting with early stages of lymphedema. If nurses tell me that they can't find the vein in my left arm, I tell them to take their time, that it's off to the side.

Not sure where you are located, but Wellspring has a really fantastic exercise program with personal trainers who are very well informed and familiar with coping with lymphedema. I was fitted with a compression sleeve and garment at Solace

The most helpful thing I was able to do precovid was restorative yoga with Ani O Yoga. I have also done lymphatic drainage massage and osteopathy which work wonders when combined.

Will tell you how corrective surgery goes when hospitals are back to booking for electives procedures. Apparently, this guy at Humber River Hospital is the only one in Ontario who can do it.

 

Re: Lymphedema post mastectomy - needles/blood pressure in affected arm

Posted by prairiemom on Aug 3, 2020 12:21 pm

I don't have anything done on my left arm either. I actually had a custom medica alert bracelet made, as I am also diabetic. 

Re: Lymphedema post mastectomy - needles/blood pressure in affected arm

Posted by Scottie5 on Aug 4, 2020 11:54 am

I had lumpectomy and axillary node dissection - 18 nodes removed from left side in Jan 2020 and was told not to have blood draws, blood pressure and my PICC line had to be in right arm. I was also told not to wear purse or bags on left arm and initially not to lift more than 10 lbs. I just started radiation but doctor said due to number of lymph nodes removed am at higher risk for lymphodema.  They do have a lymphodema specialist here so I have asked for a referral to see if anything I can do to decrease the risk. I also know some folks with lymphodema will use a compression sleeve.  

Re: Lymphedema post mastectomy - needles/blood pressure in affected arm

Posted by Treepeo on Aug 4, 2020 8:44 pm

Hi Scarletkate‍, 

I had a double mastectomy, modified radical on left and simple on right.  They can only use my right arm to draw blood or do blood pressure.  Chemo was really hard on my veins and now they have a heck of a time finding a vein they can use when I go for CT scans, and I have to go every 3 months.  So going for CT scans has now become a bit traumatic for me, because invariably I get poked and poked before they can find a vein and I end up with numerous bruises.  It's so distressing.

What is a biologic infusion?  I have never heard of that before.  How many will you have to have?  I am wondering if you could get a port.

Re: Lymphedema post mastectomy - needles/blood pressure in affected arm

Posted by Scarletkate on Oct 16, 2020 6:09 pm

Treepeo‍   My sincerest apologies for just getting back to you until now.  And thanks to everyone else who shared their experiences and recommendations. One of my best friends passed away suddenly and I've been very absent from following up on things. I am so sorry that the needles are so traumatic for you.  My brother recently had a PICC line inserted.  It is more temporary than a port, but he may need that eventually.  My biologic infusions are every 8 weeks, and I have really good veins in my right arm so crossing my fingers and hoping things will continue to go well with that.  Scares the heck out of me when she takes my blood pressure on that arm when the IV is in, but they know what they are doing.  Biologic drugs are used for the treatment of numerous diseases and conditions and are the most advanced therapies available. Some biologic drugs are used for the treatment of Crohn's disease,  ulcerative colitis, rheumatoid arthritis, and other autoimmune diseases.  I have rheumatoid arthritis.  I hope you are doing well.  Drop me a line to let me know how you are doing.
Take care,
Kathy 

Re: Lymphedema post mastectomy - needles/blood pressure in affected arm

Posted by Treepeo on Oct 19, 2020 1:42 am

Hi Scarletkate,

I am sorry you lost one of your best friends.  I can only imagine what you have been going through.

My breast cancer spread to my lungs.  My mets continue to get worse, so early in the New Year, my oncologist wants me to start immunotherapy if he can get me into the program on a compassionate basis.  This particular program is specifically designed for people like me who are triple negative.  If I decide to do that, or if I opt for more chemo, I will most likely have a port inserted, because my initial chemo really destroyed my veins.  I can't even bear the thought of anyone trying to insert a needle into my hand any more.

Initially, I was gung ho on the idea of immunotherapy.  However, I am now having second thoughts.  One of the drugs they would put me on is Paclitaxel.  I already had 4 rounds of that drug in my first chemo  experience, and it did not go well for me.  It made my two big toenails fall off.  I got neuropathy in my hands and feet, and a wicked infection on my face.  I am trying to decide the best course of action.  I want to stay alive as long as possible, but I also want a good quality of life.  So that is the dilemma I am wrestling with right now.  Having said that, I don't want to dwell on it.  I am just trying to enjoy each day I have right now, despite all of the COVID restrictions.  We have to do the best with the hand we're dealt.