Strange symptoms - need answers!

[StephN]

Hello Everyone -
Once again I am "a puzzle" to my care team. More of a Medical Nightmare looking at it from my side. Let me know if any of you have ever heard of or seen anything like what I describe below. Thanks.

Last spring I posted about having been diagnosed with a clot along my catheter and needing to have anticoagulation therapy for that. Several answered about that and it seemed a good thing to do with reasonable success.

Now after the prescribed 6 months of taking these expensive Lovenox shots, I still have the symptoms I started with, just less severe. Now they are not even sure I need to stay on the shots as they may not be doing a thing for me.

Saw my port placement surgeon yesterday (the famous Dr. Hickman) and he was shocked at how puffy my face and neck still are and at the sight of the venous pattern on my lower chest and across my ribs. It really looks like a mild case of varicose veins spreading just below my breasts. Said he NEVER saw anything like that before and had me come across the hall for all his nurses to gather and take a look at me. They too were completely shocked to see how I looked.

Dr. H. will consult with some of his colleagues and try to come up with an explanation or another specialist to send me on to. Since the puffiness and venous pattern are on BOTH sides and fairly even, he is doubting the catheter is the problem. He is even suspecting an allergic reaction of some kind, but to last this many months, is also strange.

I could see the wheels going inside his brain as he stared at me (really more like staring past me at my problem). So, I have hope that somehow I can get to the bottom of it.

[PinkGirl]

StephN, Is there really a Dr. Hickman, or was that a joke?

[StephN]

My Dr. Hickman IS the venous access device specialist who was inventor of the "Hickman line." It has its uses for some patients, but he mostly does subcu port implants.

He is on the older side, but I would not trade his experience for a younger surgeon.

[Lolly]

Steph, I've had small variocose-like veins around the scar line of my left-side mastectomy, ever since my first recurrence in 2001. The recurrence was to the nodes, supraclavicular and neck, on that side, and also a small area of skin right over the clavicle. This little area of skin has also had a veinous look ever since.
My onc is always vigilant about checking these areas, looking closely and feeling for any possible lumps, whenever I have a clinical.

My "vein" problem may look entirely different than yours, so don't know if this is helpful, but at my initial recurrence a biopsy of the clavicle skin disturbance confirmed it was b.c., but was determined to be NOT inflammatory.

Hope this helps rather than scares. If it continues to be a concern, maybe a biopsy?

<3 Lolly

[Sheila]

Steph
I will ask my brother who works as a cardiac interventologist at several Kaiser hospitals and is very familiar with the Hickman Port as well as many others...he is always telling me what type of port to get if I need one....they are very fond of the ones in the forearm....but he has stated that the Hickman is state of the art....anyway, he deals with ports every day, I will check with him.

[StephN]

Thanks Sheila -
My port is a BARD make. It is not a Dual Lumin, the normal single. There are a few models and I am not sure which I have.

FYI - A Hickman line has the end left outside the chest and capped off.

[PinkGirl]

I had a Hickman line for my treatments and loved it. It changed the
whole "chemo" experience. It never occurred to me that some guy
named Hickman invented it......cool...

[Barbara H.]

Hi Steph,
I don't have any answers, but my thoughts are with you. I hope the experts can clear your situation.
Sending healing thoughts your way.
Barbara H.

[fullofbeans]

same here I cannot answer your questions but my kind wishes for a swift recovery are with you

[kareneg]

I am sorry but I have no answers but I wanted you to know that you are in my prayers and always in my thoughts. I hope they get to the bottem of this fast. All my best.

[StephN]

Thanks All for your nice thoughts and prayers. Appreciate them.

Wanted to clear up a couple of questions.

1. The venous pattern (like webbing) is NOT in my radiated area. It is fairly uniform on both sides of my midrif area. Now hove a few NEW veins showing on my back under left shoulder blade.

2. I do not wear tight bras or use underwires. Nothing else constricting.

3. No pulled muscles from exercise or overuse of that area - like I am doing hard pilates every day! (LOL)

This condition is so unusual that NONE of my several doctors have ever seen something like this. I feel like a mutant!

[lilyecuadorian]

Steph I' thinking about you ...so sorry that I cant help ...just with my prayers ..my mind ...

[Alice]

My first thought was that there may be some reaction to the materials used in the line ie: being allergic to latex. We are all used to people being allergic to latex but there are other things that less people are allergic to that we don't hear about as much and can be just as problematic to the people that they affect.
Alice

[Sheila]

Steph

Here is the advice from my brother and his Dr Collegues in southern California

Subclavian vein occlusion caused by the catheter....very common...get a upper extremity venogram by Interventional Radiology to confirm....Maybe vein angioplasty would open it but usually only for a little while

Hope this helps, Sorry it took until today when he was at work....

[lilyecuadorian]

OMG that is one great form of SUPPORT ...Sheila I hope so help too

[StephN]

Thanks, Sheila -
I did have the venogram in May which showed up the partial occlusion in the first place. With this info I was put on the anticoagulation therapy.

Maybe I need another one, but am still waiting for the concensus from my team at the cancer center.

Since I have the other symptoms not so common for a problem caused by the port catheter - this is the puzzle. Still giving myself the shots till told otherwise ...

[Mary Jo]

Just to say I'm thinking about you and hoping a conclusion is coming quickly.

Love and a hug I send,

Mary Jo

[Julie2]

Hi Steph,

Hope your problem will be resolved soon. Sending good wishes and positive thougts on your way.

Julie

[chrisy]

Well, Steph, you are very special. Somebody's got to keep that crack medical team of yours on their toes - but I reckon you are probably tired of it being YOU. Hope you get some answers soon!

Much love
Chris

[Roz]

Hi Steph, I also have a BARD port. I have had it in for more than 2 and a half years now. I have it in the inside of my upper arm. I often find that I get a little bit of swelling below the elbow. I can't work it out at all. I have asked the chemo nurses and they don't seem too concerned and I don't have a fever. I am sorry that you have had these current problems, I hope they can resolve it all soon.
Regards, Roz

[Mary Anne in TX]

StephN, this mystery is better than Mystery Theatre on Sunday nights. Far more important also, of course! Please keep letting us know what you find. I'm sending good investigative prayers your way. ma

[Christine]

Steph
Wish I knew if this causing this puffy side effects; or can it be causing a form of lynphodema, that could possibly come fom the red spots that indicate a form of vein or node inflamation. Have you had any sterodal therapy in recent months? I'm just trying to help you brainstorm... It maybe reasonable to check for inflamation, unless your onc has already thought of that. Are you still going to Dr. Graylow?
There could be a other side effect that can come from takinking other chemo with this injection . Next time you see your Onc. Try helping him/her with more ????'s

One thing I know about vein infamation, swelling happens at nearby sites. YYou may need an ultrasound to confirm.
Steph, call if you need any more info or opinions. I will ask my onc next week.
I hope you find the answer to this unusual problem. Don't think it us serious . My sincere loving wishes to you . Hugs, Christine

[Vanessa]

I hope your problem is solved soon and without any problems. You are in my thoughts and prayers.

[StephN]

Well, everyone -
My PET/CT of this Tuesday has revealed yet another of the ways that our bodies do amazing things. By the way - nothing was found to indicate any canser activity. Whew!

My last PET/CT in April showed only a very small occlusion in my sub-clavian vein where the catheter threads through. In May the venogram showed a little more clotting. Then I went on the anticoagulation therapy for 6 months.

The new scan shows that that area of my sub-clavian is COMPLETELY clotted up now (in spite of the anticoagulation therapy!!!). BUT - this is the amazing part - my body has created a new network of blood channels AROUND the clotted area and in my general chest region. This explains so much. Like the "venous pattern" that seems more like varicose veins. Well, that is what it IS!

It seems that once these new channels got connected up and moving the blood well enough my swelling has gone down and I am looking much more normal these days.

This also explains why I had the shortness of breath and other symptoms in my chest. So I now feel like I can once again go back to exercising in small increments.

At this point the team thinks I should just keep the port I have since it is working well, and my body has found a way to take care of the blockage created by the clotting along the catheter line.

So that's it - once again I prove to be a "learning experience" for my canser care team. Hope my body will now stop volunteering me as a guinea pig!

[TriciaK]

Steph, you are an absolutely amazing warrior! Every time I read one of your posts I learn something new! It is so incredible how your body created new pathways---it makes me appreciate the miracles that so often help us when things look so bleak. Thank you for sharing! I have had my port for 3 and a half years with no problem---don't even know what kind it is, but it is on the left side just below the collar bone. It has been a tremendous blessing because I have fragile veins that are impossible to find. I used to feel like a pin cushion. I haven't had herceptin or anything intervenous for over 2 years but don't intend to have my port out if I can help it because we use it for all my blood tests. I even insisted it be used when I had my triple bypass and threatened to go home when the nurse said at first it couldn't be. Your posts and all the information you have shared with us are wonderful! Thank you and may God continue to bless you in your remarkable battle against our common enemy! Hugs, Tricia

[Joan M]

Steph,

I had my port in for three years and during the course of that time I developed a mass of tiny veins all across my chest with "pooling" in some spots, which all went away when my port was removed.

My onc even mentioned it when examining me before I got a chance to point it out. She noticed it immediately.

Every oncologist I consulted could never explain the veins. They all said they'd never seen anything like it.

I would also have periods when my face would be swollen and puffy, and my face would get really bright red and puffy if I bent over. I would also become very light-headed if I bent over. And this was quite a while after I ended my chemo and Herceptin when I had early stage bc.

It all went away after the port was removed.

Joan

[Lolly]

Wow, that's amazing! I hope it's ok if I print out your post, Steph, to show my infusion nurses. They would be VERY interested in this. Let me know if it's ok, I don't want to overstep.

<3 Lolly

[StephN]

Dear Lolly -
Anything I post here can be shared with anyone you feel would like to see it. Especially, I know that this is a NETWORK and we are networking with each other for a common good. So print away.

Joan - Thanks for posting. I am so glad to see that someone else had these symptoms and also was a "rare bird." Sorry it had to be you, but glad to know that it went away when you got the port and catheter removed. I also got light headed if I put my head down.
In my case I am on long term Herceptin being stage IV. So, I don't see the thing coming out any time soon. I am trying to save my viens in left arm for later, as I intend to live to need to use it. Can't use the right side as that was the node dissection area. Guess I am learning to live with this second port. The first one was in for about 6 years and the catheter was put into a different vein that was much happier!

[Kim in CA]

Wow Steph,

That is truly amazing. Thanks for posting this info as I always tune in to any port related topics.

My port is over 6 years old and is getting quite finnicky. Only the more experienced nurses at my infusion center can get a blood return anymore. The skin over the port is also quite thin and fragile, making the port very prominent. I always request a 22 gauge needle when they access my port so as not to damage my skin any more than necessary. Don't know how much longer my port will hang in there, but this certainly is valuable information to me!

Thanks so much and so glad you got to the bottom of this mystery!

Kim

[Andrea Barnett Budin]

Well, well, Steph. The end of the story. And it's a good one. It all makes sense now. Your body is brilliant. Good job, bod! And I love that you are still remembering to diss canser http://cdn-cf.aol.com/se/clip_art/gstres/badday/greenface but misspelling it!

I admire your conviction to get the bottom of mystery and cooly maintain a reasonable head midst all the NOW WHAT?! that no one could seem to figure out.
Thanks so much for sharing this valuable lesson, which we will pass on.

BTW, ALL YOU LADIES WITH PORTS, y'all know how we love 'em and must care well for them. Freezing sprays and the like deteriorate surrounding skin, so I stopped using that a while ago, at various chemo nurses urging. The Imaging Center has new, faster, high powered Ct scans and has decided not to access ports for this dye, as they had in the past 9 yrs. So I am now down to my one good vein, in my wrist, in my one good arm. All other veins prove to roll over, collapse and blow out, much to the amazement of the nurses. But they look so juicy... They are an optical illusion.
Be good to your port, ladies, it has direct access to your heart. Still doing Amocillin 4 500mg pills one hr before any and all dental work, for anyone with a port.

Regulations for heart patients have changed but not for chemo patients w/a port.
Andi

[jones7676]

So glad to hear your mystery is solved! And although it was a very "trying" experience for you, you may be able to help someone else in the future when they have the mystery occurence. I really hope you get a break now and have little or no worries for a while!