Update on my Mom's Chemo IV Complication (so frustrating!)

rcdeman

Just wanted to give everyone who has been with me during my mom's uterine cancer treatment an update.

My mom finally completed her extremely prolonged radiation treatment (prolonged because they decided at the last minute to split up her lower and upper pelvic radiation treatments and radiate each area separately.) So after 12 weeks of radiation (5 weeks of daily external radiation at lower pelvis, 5 weeks of daily external radiation at upper abdomen/pelvis, and 2 weeks of 2 days/week brachytherapy), they gave her a month off to recuperate.

So on 05/08/17, we went in for her fourth chemo session. I knew it didn't bode well when the nurse who applied my mom's IV did not heed my mom's complaint that insertion of the IV hurt. It never hurt this much before according my mom. However, the nurse, instead of looking for a different vein, just gave my mom a hot compress and started her 3 hour Taxol session. During the second hour of Taxol IV, my mom woke up from her short nap (they gave her a Benadryl and other medication that made her drowsy) to notice her arm was swollen and red. She called the nurse over who started panicking and just pulled the IV out without trying to draw as much as the Taxol drug out of her swollen arm. It was apparent that the chemo drug was not going into the vein but to the surrounding tissue and skin.

Even more unfortunately, the only medical oncologist in the clinic that day left early and so they just gave my mom a hot compress and sent her home and told her to come back the next day to see the doctor. (They didn't even give her an urgent appointment time and made her come at 1 PM, which is just about 24 hours!) During this time, my mom's arm was burning hot, completely swollen and red. I did some quick research and realized just how badly the nurses handled the situation. Taxol is an irritant and a vessicant that can cause tissue necrosis (looking up chemo extravasation online results in some horrid photos of people who suffered from tissue necrosis)-- when chemo extravasation occurs, it is procedure to try to draw out as much Taxol as possible (minimum 10mL) from her arm and then give her a cold compress first.

We ended up going to the ER at the doctor's recommendation, the one who left early the day before , the next day and stayed until Wednesday. They administered two bags of antibiotics via IV, and I think that was the only thing they could really do to hopefully help with her swollen right arm. We just had to hope that the Taxol drug would disperse by itself. Of course, chemo has been postponed until 05/30 (which was supposed to be her 5th chemo session). It's going to prolong her treatment time and I don't know how that will affect overall effectiveness of the overall sandwich treatment.

I am really upset at how the nurses handled the situation. First of all, it was wrong for that nurse to ignore my mom's pain. My mom told her that IV insertion during the previous chemo sessions did not hurt nearly as much so she requested the nurse to try inserting the IV at a different vein location that felt more comfortable. The nurse did not listen to her and only left her a warm compress. I'm not sure if she was just lazy to do the insertion again, but I believe her inaction ultimately caused the chemo extravasation, and my mom is ultimately paying for it.

It's a week now after her chemo IV complcation and fortunately her arm's swollenness is decreasing, but the redness is still there. We are still observing to see whether the effects of chemo extravasation will flare up again.

During these days, she's also developed a persistent pain in her left thigh and buttocks that is spreading to her leg. She's having a hard time walking, and I'm quite concerned about this. I think at this time, my main question is this: Has anyone experienced thigh, butt, leg pain? What could be the cause?

Thanks for hearing me out. I think I needed to get this all out because I'm still simmering inside. The bad news is that we can't avoid the nurse who applies the IV. The chemo clinic my mom was assigned to is small and only has one medical oncologist and two nurses. The two nurses take turns and their shifts switch out every several weeks, so only one nurse is there at a time. It's frustrating and I'm not sure what to do now that they've pushed back her chemo session to 05/30/17.

Sadly I haven't much time to post in the forums because I'm still working full-time and juggling with what's going on, but all of you are in my thoughts. Just because I don't have time to post doesn't mean I'm not thinking about you all.

Love,
Rebecca

Lou Ann M

So very sorry to hear this

i would be way pst frustrated and simmering.  This is terrible treatment.  Is there any chanc that you can go to A different cancer center? I switched to a different center when my cancer recurred because I didn't like what I considered inept treatment by the nurses .  It is a much longer drive but well worth it. I have had chemo postponed several times because of low blood counts and several times for travel plans. Overall in the long run it did not change anything

Hugs and prayers, Lou Ann

NoTimeForCancer

Oh Rebecca...your mother is

Oh Rebecca...your mother is so lucky to have such a loving daughter.  There is no doubt she appreciates everything you are doing for her. 

It is understandable for you to be so upset, but try to take a breath and let's break this down.

1- your mother's leg/butt pain.  I would say call the doctor's office.  From everything you said she has had a lot of radiation and maybe this is a side effect - but I am no doctor.  If she has to use that local cancer center see if they can call out for a second opinion or another doctor's input.

2 - your disgust with the local cancer center's nurse's action.  Really, try to remain calm and make a call.  I think they are waiting for yelling, and while you have every right to do that, talking to them calmly about the problem and how this can be avoided will get your farther.  I think being calm is actually more terrifying for them then getting wound up. 

I am glad you came and caught us up on your mom.   I am not a mother, but for everyone lucky enough to have a caring mother, we know what they did for us as children, so when our mom gets sick we want to help them in return.  You have a lot going on - we'll understand if you can't come and visit - spend time with your mom.  

Kvdyson

It sounds like your poor

It sounds like your poor mother has really been put through the ringer! You are so right to feel upset with the way she has been treated - it's completely unacceptable. Is there any chance that she can change to another chemo clinic? You mention that she was "assigned" to this one. Who assigned it and can you speak to that person about the situation? Also, has she considered getting a port? It's not fool-proof but it may help prevent the extravasation from ever happening again. 

Nellasing

Oh Rebecca,

I am SO SO SORRY!!!  That is awful for your mom and awful for you!!!  I took care of my mom and so many times people seem to just brush off someone who is older and in pain and it caused some awful complications in our lives also.  All you can do is be her advocate - which you did a GREAT JOB OF with research and not waiting but getting her to help!!!  But someone needs to know about this because there is liability here.  I am with the others that I'd try to get to a different cancer center- that one is so small that they will no doubt be protecting their butts- at the very least you need to report the whole incident and see what can be done.

I haven't had radiation.  I have had pain in my hip, leg, butt and about day 3 after chemo it really REALLY got bad.  That's just me and I have no idea what could be causing your mom's pain. 

Please know you are in our thoughts and prayers as you juggle your life, work and your mom's illness.  I hope you are taking care of you!  I know that might sound impossible but truly- if you do not you can't be there for anyone.  Keep us posted as you can. (((HUGS)))

SandyD

Not at all acceptable!

Rebecca, I am so very sorry for what your Mom (and you) have been dealing with! At the very least your Mom or you need to make a complaint to whoever administers the center and insist that your Mom not be treated again by this nurse. It is also inexcusable that there was not an oncologist on duty at that time! If a larger cancer center is available to your Mom, it may make sense to consider continuing her treatment there and to transfer her care to a gyn oncologist associated with that center. If this is not possible, consultation of a larger center with the smaller center (if this can be arranged) might be considered.

I did experience considerable pain in my legs and into my feet within a couple days after chemo (taxol and carboplatin) HOWEVER it's important for your Mom to report all symptoms to the oncologist whether potentially attributable to treatments or not!

Hope your Mom is feeling better! Keep us posted. 

Soup52

I'm so sorry your mother has

I'm so sorry your mother has had to deal with this. I agree with the others who have suggested another center possibilitY. Also, if she had a port she might find the infusions to be easier. Ports aren't always trouble free, but it may be worth a try.

rcdeman

Thank you all for your kind

Thank you all for your kind words.

My mom's just finished a five day oral antibiotic regimen, and thankfully her arm is improving. It still hurts when she presses down on it and I don't know how long it'll take before her arm is completely normal again, but at least she is feeling a bit normal again! We have told her oncologist about her thigh pain and leg pain but he doesn't seem to know the reason.

It's been a long while since she's gotten a CT/PET scan, ever since after her second surgery back half a year ago (since the radiation oncologist started her radiation therapy early, they didn't do the CT/PET), and I'm concerned whether her treatments are working for her. It seems they won't issue a CT/PET scan until after all her treatments are over. Until then, it seems we're left in the dark. It's an unsettling feeling.

We did consider trying to switch over to different chemo clinic, but since we only have 3 sessions left, we think it just might be simpler to complete her chemo at her current clinic. We'll figure it out and will let you all know what we decide.

Best to all of you!
Rebecca

DrienneB

Hi Rebecca,

Hi Rebecca,

I was wondering about how your mother is doing and I am so sorry to hear what she's been through - and what the two of you have been through really. There have been so many difficulties.

I just wanted to mention that my friend who had the Taxol/Carboplatin regime for her ovarian cancer about a year after I had mine, had extreme leg pain (and I don't remember if it was in her buttocks as well) from the chemo so that she could barely walk. It was probably nerve-related, but it wasn't as most of us describe as the tingling or numb kind. I think it was after just 2 or 3 rounds of chemo.

-j

rcdeman

DrienneB said:

Hi Rebecca,

Hi Rebecca,

I was wondering about how your mother is doing and I am so sorry to hear what she's been through - and what the two of you have been through really. There have been so many difficulties.

I just wanted to mention that my friend who had the Taxol/Carboplatin regime for her ovarian cancer about a year after I had mine, had extreme leg pain (and I don't remember if it was in her buttocks as well) from the chemo so that she could barely walk. It was probably nerve-related, but it wasn't as most of us describe as the tingling or numb kind. I think it was after just 2 or 3 rounds of chemo.

-j

Thanks Jane. It looks like my

Thanks Jane. It looks like my mom's thigh pain is intermittent. I'm assuming all her various aches and pains are treatment related and will hopefully gradually go away once she finishes with her primary treatment. I'm praying for the best.

Hope you are doing well yourself.

Best,
Rebecca

Kaleena

Hi Rebecca:

Hi Rebecca:

Sorry your mom is going through so much.   I am surprised that they didn't put a port in for your mom to receive her chemo.  That would have saved her veins.   Secondly, I am still experiencing butt pain, left hip pain and leg tingling/numbness.   Recently, mine has been getting worse.   I have so much scarring that they believe that it was is causing it.  I had so much scarring from the endometriosis that they decided not to do pelvic radiation as it would have been more trouble for me than not.   I have had 8 abdominal surgies and I have a small soft tissue mass.  I think it is growing again or the scar tissue is growing as it has been more painful lately.   Any mass or scarring in that area presses on a nerve which can cause all these symptoms.   

I would definitely bring it up to her doctor each and every time so that they know.   Some of these things should go away once your mom is off chemo.   My best to you and your mom.

Kathy

rcdeman

Kaleena said:

Hi Rebecca:

Hi Rebecca:

Sorry your mom is going through so much.   I am surprised that they didn't put a port in for your mom to receive her chemo.  That would have saved her veins.   Secondly, I am still experiencing butt pain, left hip pain and leg tingling/numbness.   Recently, mine has been getting worse.   I have so much scarring that they believe that it was is causing it.  I had so much scarring from the endometriosis that they decided not to do pelvic radiation as it would have been more trouble for me than not.   I have had 8 abdominal surgies and I have a small soft tissue mass.  I think it is growing again or the scar tissue is growing as it has been more painful lately.   Any mass or scarring in that area presses on a nerve which can cause all these symptoms.   

I would definitely bring it up to her doctor each and every time so that they know.   Some of these things should go away once your mom is off chemo.   My best to you and your mom.

Kathy

Hi Kathy,

Hi Kathy,

Ugh, so sorry to hear your pain is getting worse. Eight abdominal surgeries is insane. I do think you should maybe get yourself checked just in case. We can never be too sure of the causes of the various aches and pains that happen especially considering our past medical history.

Right now, I'm just observing and writing down what she's experiencing and creating a timeline, just to see how long she's experiencing these pains, when, and where. I hope you're right about some of them going away after she's completed her treatment.

We decided with the suggestion of the medical oncologist to turn the rest of her chemo treatments using the dose-dense method, so right now she needs to go every week to get a smaller dosage of Taxol (rather than every 3 weeks). We're hoping this will help alleviate some of the side effects, most importantly neuropathy and neutropenia. However, on the other hand, this means a lot more IV puncturing. I'm not sure why the doctor didn't put a port in for my mom either. We asked about it before she started chemo, but he said she looked like she had healthy visible veins. But with one arm recovering from her chemo-induced cellulitis, she only has one arm available right now and one vein near her elbow has already hardened from too much IV.

Wishing you the best Kathy.

Rebecca

Kaleena

Hi Rebecca:

Hi Rebecca:

That must be so painful for your mom to get that IV in.   My mom has breast cancer and she gets treatments every 3 weeks until it stops working.   Sometimes she gets someone good and gets it in on first try.  Other times, she comes home bruised.   After 18 months, they now suggested a port.   They should have told her since they knew she would have to get it for the rest of her life she should get a port, but they didn't.

With me, I do get regular PET scans and CT scans.  My last PET scan was June 2016.   I go for a CT scan at the end of this June.

I hope they can do something more for your mom when getting an IV.  There has to be a better solution for her.

(((Hugs)))

Kathy

rcdeman

Kaleena said:

Hi Rebecca:

Hi Rebecca:

That must be so painful for your mom to get that IV in.   My mom has breast cancer and she gets treatments every 3 weeks until it stops working.   Sometimes she gets someone good and gets it in on first try.  Other times, she comes home bruised.   After 18 months, they now suggested a port.   They should have told her since they knew she would have to get it for the rest of her life she should get a port, but they didn't.

With me, I do get regular PET scans and CT scans.  My last PET scan was June 2016.   I go for a CT scan at the end of this June.

I hope they can do something more for your mom when getting an IV.  There has to be a better solution for her.

(((Hugs)))

Kathy

Sometimes I think doctors

Sometimes I think doctors just go for the easiest, laziest route. From what I've seen with this specific oncologist, all his cancer patients get their chemo treatment through IV. I haven't seen someone with the port yet.

My mom is also about to be scheduled for a PET/CT sometime next week. We're waiting for insurance approval. Let's pray that both her scans and yours come out with favorable results.

Love,
Rebecca