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Strange chemo side effect or vit b6 overdose?

Chelsea71
Posts: 1170
Joined: Sep 2012

Last week Steve's face and ears turned blue/purple. Face was slightly swollen. Thought it was from allergies. On Friday he went to the home care office to get disconnected. The nurses didn't like his color so they told him to go to the local hospital. The ER doc actually got ahold of the oncologist in Ottawa. She had no idea as to what it could be. She recommended a ct scan of the neck and head. The concern seemed to be a new tumor, athlerosclerosis of a venous vein or any other type of obstruction. They compared his blood work from several days ago (before chemo) to blood work that they took at the hospital. Blood work looked really good. No changes since previous blood work. CT scan came back fine. The oncologist told the ER doc that the chest ct scan done last Thurs showed no abnormalities. The ER doc explained that all the big problems had been ruled out. He figured it was just an unusual chemo side effect. I then mentioned that for the best 2 or 3 weeks he's been taking vit b6 300 mg daily. He seemed to think that this combined with the chemo could be the cause. Recommended no more vitamins for now. The blue purple tinge has subsided for the most part. Face is still puffy around his eyes. Blood pressure was fine. Urinalysis was fine. To me, blaming on the vitamin is a bit of a stretch.

Any thoughts?

Chelsea

Chelsea71
Posts: 1170
Joined: Sep 2012

Also, no swelling or retention elsewhere. Fingers, legs, feet etc are normal. Seems to be localized to the face.

Craig mentioned on a different thread that the 5FU can affect the mucous membranes and even cause the tear ducts to shrink. I wonder if the problem could have something to do with that?

He gets 8mg dexamethasone with his chemo. His upper body had kind of taken on a new shape. Has gained weight on his head, face, chest arms etc.. Does anyone think it could be related to the dexamethasone?

I would appreciate any feedback.

Thanks.

PatchAdams
Posts: 272
Joined: Nov 2011

Nana B had purple hands from chemo.  Maybe she'll see this and respond or you could do a search of old posts.

Chelsea71
Posts: 1170
Joined: Sep 2012

I will. Thank you. Chelsea

Annabelle41415's picture
Annabelle41415
Posts: 4243
Joined: Feb 2009

My oncologist recommended B6 for me throughout my chemo so that just doesn't seem right.  I'd think more chemo related than vitamin.  Glad he is doing better.

Kim

dmj101's picture
dmj101
Posts: 526
Joined: Nov 2011

They tell you take b6 to fight the neuropathy from the oxycaliplatin chemo.

5fu can cause Hand and Foot Syndrome and that will cause the hands and feet to discolor.

Neuropathy is usually in hands and feet..

However the hot and cold alert they advise may have some connection... possibly... I know

As for te reshape of the body and where weight seems to deposit.. I cannot comment on..

I hope you solve the mystery...

Chelsea71
Posts: 1170
Joined: Sep 2012

I spoke too soon.  The situation worsened.  Face got more purple and swollen and he started having shortness of breath.  We are at the ER in Ottawa now.  They say he has a blood lot in his neck. They are meeting as a team to rewiew his history and try to figure out what to do.  They are concerned about the lack of blood flow to his brain.  The problem may be related to the port.  

 

It's really nice to have all you guys to share this with.  

 

Chelsea

Dxed
Posts: 79
Joined: Dec 2012

 

I am sure the docs will find away to attend to the problem. Wish you both all the best.

 

 

Sander

 

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

goodluck, hugs

pete

Chelsea71
Posts: 1170
Joined: Sep 2012

Thanks Pete.  We got good news last night.  The "cancer doctor" on duty explained the results of the ct scans taken last Thurs.  chest ct fine except for several blood clots.  Liver tumors have shrunk and the questionable retro peritoneal lymph node is stable.  Steve's onc told us to hope for no changes as this would mean that it's not likely cancer but just a funny looking spot from the HIPEC surgery.  As for the blood clots (several in lung, one in neck, a couple near the heart), it's a daily needle for rest of life.  Oh well, there's worse things in life.  So we're pleased about the scan results but I just can't shake the feeling that some sort of bad news is coming.  One of the residents asked me if he's ever had cancer on his heart.  This has left me feeling rather unsettled.

 

Chelsea

jen2012
Posts: 1196
Joined: Aug 2012

Geez Chelsea - that sounds scary!  I'm glad things look good on the scan, but sorry Steve has to deal with these clots now.  Hang in there and don't let the resident scare you.   We met a lady in chemo last week with colon cancer - they gave her 6 mos to live over 2 yrs ago and she's still hanging in there - she's in her 70s.  She said "they don't know what they are talking about 1/2 the time!"  Hey, not cancer related, but my mother was given months to live - over 30 yrs ago and she's still around to tell the story! 

Chelsea71
Posts: 1170
Joined: Sep 2012

Yeah, it has been kind of scary.  He's been admitted and I think he will be here for a while.  Tomorrow is the app. with the liver surgeon and I don't think we are going to make it.  I'm looking at him now.  His face is red and purple and blue and his head is big and swollen looking.  Veins in his neck are very pronounced.  He's started the needles but in the meantime they seem to be worried about a stroke.

 

Several things are on my mind.  You really can't trust doctors to look after you.  It's crazy that the Cornwall er doc thought this could be caused by vitamin b6.  We all have to be very strong self advocates.  Cornwall was happy to send him home with a purple, swollen face.  I learned this lesson 20 months ago.  I guess I forgot.

 

The other thing that's jumped out at me is just how used to this new cancer life we've become.  Steve is so used to hospitals that he seems as comfortable as if he is in his own living room.  He is on the same floor as where he was first diagnosed.  I remember the shock and devastation I felt at that time.  I walk the same halls and I don't feel that same upset.  I sure as hell don't feel happiness.  I guess I feel like we've conformed to this new life that revolves so much around his medical needs.  I wonder if this is a good thing or a bad thing?  

 

As you can probably tell, I have some time on my hands.  I think I should go buy a book. Lol

 

Thanks,

Chelsea2013-01-07

Sundanceh's picture
Sundanceh
Posts: 4283
Joined: Jun 2009

It's a good thing, Chelse...you're in a firefight right now...all of your senses are geared to fighting...at handling one situation...and then moving over to the next fire to try and put it out...while diligantly looking over your shoulder to see the other fire smoldering, while hoping it doesn't catch blaze again.

Once you figure out the routine as you have, it becomes sort of second nature, to have a feel and a way around the hospital...after all, you know the drill by now.  So, it's good that Steve is calm...and you too.

It's the constant evolution of going from one state of the fight to the next....from scared at first...now to more active approach...and the realization that one must remain vigilant as often as possible...because mistakes do happen.

I'm always real good about looking at the gauges and understanding the numbers on medical equipment...so you begin to know what's right and what isn't.

One evening, I was by myself after my wife had left for the night...I had a twisted bowel that put me in the ER one evening...was tossing up bile and the like...diarrhea too...couldn't hold down a sip of water...so I got really dehydrated quickly.

So, they ramped up the saline when I got there...for 24 hours that was a good idea...but then my tissues got full...they had the pumps turned up to 75% capacity...I was being drowned by saline fluid...I was urinating every 6-minutes per hour...for 10-hours!

Pretty close to 100 pi$$es that night...that's all I did...every 6-minutes.  I filled up nearly two 2-litre bottles of fluid.

I called the nurse in and said the numbers on the pump are too high and need adjusted....I'm being flooded.  They stared at the meter...made a couple of calls...doctor never called back....so they made the decision themself...at my urging of course:)

But, with no one there to watch me...and if I had not been my own self-advocate, I could have been in serious trouble before medical personnel could have or would have intervened.

You don't always have to know...but pay attention to your surroundings when you can...watch for patterns...the live you save may just be your own.

I'm so sorry that Steven is going through all of this...I'm worried for him from what you are telling us...hoping for a turnaround for the both of you.

-Craig

smokeyjoe
Posts: 1428
Joined: Feb 2011

Sorry you're both going through this....just to let you know I've been doing the lovenox shots for two years now.   They may combine the shots with warfarin to get his INR to where they want it  then to the lovenox shots alone.   My oncologist compared it to someone with diabetes getting a daily injection.     Good other than the blood clots that the scan was stable. 

janie1
Posts: 753
Joined: Apr 2011

Thinking of you both......this is such tough stuff.  Hope things can get resolved soon.  One step at a time.....how often do we hear that?

Keep us updated ( a lot).  Everyone is pulling for you two.

HUGS

 

Chelsea71
Posts: 1170
Joined: Sep 2012

Thanks everybody. Steve is getting lovenox injections here at hospital butsheen he gets home he will take Fragmin.  Apparently it works well with cancer.  Doc said the injections don't shrink the clot.  Just prevents it from growing, then the body breaks it up.  It is not a fast process so he may have these symptoms for a while.  He's been granted an LOA for tomorrow so that he can go to his app with the liver surgeon.  Not sure what to expect from that one.

 

Thanks for the support

 

Chelsea

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Hi Chelsea!

Just read all these threads.....wow. Here's a hug to start with.

A good--scratch that---GREAT doctor is also a superb detective. Slow to dismiss anomalies, and willing to dig a little deeper into what is causing a problem.

Very glad to hear your hubby is in the hospital---a good place to be until things settle down.

Hugs from California~

Tommycat

jen2012
Posts: 1196
Joined: Aug 2012

Hi chelsea....wondering how the night went. Been thinking of you guys.

Chelsea71
Posts: 1170
Joined: Sep 2012

Thanks for the concern Jen and Tommycat. He is alright. The symptoms are still there and have not improved. The thrombosis doctor said he will have to be on the blood thinners for two weeks before the symptoms start to dissipate. They are doing an ultrasound of both sides of his neck tomorrow or Thursday. We are hoping he will be able to go home by the weekend. He has given himself his first needle. It was a very dramatic event. He said it was easier than he thought it would be. (He breezes through surgeries and chemo etc, but very stressed at the thought of giving himself a needle. Go figure.). Anyhow, thanks again for your support. Hope all is well with you guys and all CSN members.

Thanks

Chelsea

Chelsea71
Posts: 1170
Joined: Sep 2012

Thanks for the concern Jen and Tommycat. He is alright. The symptoms are still there and have not improved. The thrombosis doctor said he will have to be on the blood thinners for two weeks before the symptoms start to dissipate. They are doing an ultrasound of both sides of his neck tomorrow or Thursday. We are hoping he will be able to go home by the weekend. He has given himself his first needle. It was a very dramatic event. He said it was easier than he thought it would be. (He breezes through surgeries and chemo etc, but very stressed at the thought of giving himself a needle. Go figure.). Anyhow, thanks again for your support. Hope all is well with you guys and all CSN members.

Thanks

Chelsea

Chelsea71
Posts: 1170
Joined: Sep 2012

Thanks for the concern Jen and Tommycat. He is alright. The symptoms are still there and have not improved. The thrombosis doctor said he will have to be on the blood thinners for two weeks before the symptoms start to dissipate. They are doing an ultrasound of both sides of his neck tomorrow or Thursday. We are hoping he will be able to go home by the weekend. He has given himself his first needle. It was a very dramatic event. He said it was easier than he thought it would be. (He breezes through surgeries and chemo etc, but very stressed at the thought of giving himself a needle. Go figure.). Anyhow, thanks again for your support. Hope all is well with you guys and all CSN members.

Thanks

Chelsea

jen2012
Posts: 1196
Joined: Aug 2012

Thanks for the update Chelsea - been thinking of you guys all day.  Needles freak me out too - I was kind of glad when my son decided he wants to do his own insulin shots.  I was so worried about hurting him.  He says he can't even feel them anymore and it hasn't even been 2 months.  

I hope he feels better soon and that he can get home this weekend.

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 446
Joined: May 2012

I have been doing Lovenox injections for 7 months now. My belly is so black and blue. It was so much easier to give them to patients when I was a nurse, it didn't hurt then. I got a blood clot from a picc line and It just doesn't want to totally dissolve. I had 2 ultrasounds and going to have another in March, hopefully it will be gone.
Good luck, I hope Steve feels better.
Sandy :)

Chelsea71
Posts: 1170
Joined: Sep 2012

Interesting. They think one of Steve's clots is related to his port. It is in the same vein. This is why his face turned blue and etc etc...Cancer..... This gift that keeps on giving. LOL

Thanks
Chelsea

Chelsea71
Posts: 1170
Joined: Sep 2012

Steve has been discharged from the hospital. The ultrasound showed a blood clot in his vena cava. Quite large. May never entirely dissolve. Thrombosis doctor hopes the symptoms (blue face and ears, shortness of breath, puffy face etc.) might diminish over time. Portocath did not have to be removed. The good new is that they are sure that it's the blood clots (several in lung and vena cava) causing the symptoms and not a new tumor or swollen lymph node putting pressure on the vein. There was also mention of possible brain mets causing these symptoms and that was ruled out. Overall, I am relieved but a bit concerned for his quality of life due to these unpleasant symptoms. Really hoping the blood thinners cause the symptoms to subside. He refers to himself as "pumpkin head". ( A bit of an exaggeration). So, hopefully this is the end of this unpleasant little chapter. Thanks everybody.

Chelsea

Oh, and he's back on the vitamin b6!

herdizziness's picture
herdizziness
Posts: 3398
Joined: Apr 2010

Glad to hear Steve is on the mend.  Here's to the symptoms subsiding soon.  My goodness what he's been through. 

Winter Marie

jen2012
Posts: 1196
Joined: Aug 2012

Glad to hear hes home...but sorry hes still experiencing symptoms. I hope they resolve quickly.

Sundanceh's picture
Sundanceh
Posts: 4283
Joined: Jun 2009

He's taken a real whippin'...that's some hard news there. I really feel for Steve about now. That must be some kind of misery he is in...aches just reading it.  I hope they can get this swelling down and give him some relief.  Very scary to hear of those clots. It's just awful that folks have to suffer so much with all of this.

Just one helpless feeling watching from afar...hugs to you both...glad he is home now...and hoping for a turn.

 

Nana b's picture
Nana b
Posts: 2861
Joined: May 2009

I have the hand foot syndrome.  I'm told XELODA thins your skin so we are seeing the redness that we all have but can see it when your hands are thin skinned.  My cuticles are real thin and the skin peels back ouch!  My toes are purple too..

 

Google hand foot syndrome

 

I know this is an old post but fyi.  

 

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