Boyce's blood clot seems to have returned

[Margaret]

Hi all

When Boyce was in the middle of chemo we went to Disney to take our son for his birthday. Boyce had a lot of pain in his arm and he actually assumed it was his neulasta injection. His arm started to swell, about 2 times its normal size and the pain got more intense. Blue lines started popping up out of no where all over his right side of his body. We got help and found he had many blood clots, 3 in his jugular vein and at least 6 others in the surrounding area. He went on stomach injections and warafrin (I have no idea if I spelled that correctly).

Here is the frustrating part....when we went into the urologist 1.5 months ago, he drew blood and said that even on the blood thinners, his blood clotting numbers were still not good. I called the cancer center and our oncol. said that he was taking him off the thinners...that he had been on them for 5 months and that was long enough (although he did have a small break over Christmas during his RPLND). I questioned this because why take him off this medication if he is still having blood clots?

Today we noticed again that his chest and arm was swelling and his hand is twice the size of the other. He is going back into the hospital for a doplar on Monday to look at his jugular again.

They think his port that was put into his chest caused many problems for him and they did remove it early because of that. He went through 4 rounds of bep with it in.

He does not look good to me, his breast on that side is larger than the other side not to mention his hands, arm and neck area. No one seems really concerned but should they be? Waiting until Monday seems like a long time...but I am sure I am just being a nervous care giver.

Any advice, information that anyone can offer? Thanks...love you guys!!

Margaret

[Already Bald]

Wow Margaret, I can't offer you anything useful except my thoughts and prayers. Keep us posted.
Joe

[kmom49]

Boyce

Margaret, I'm so sorry this is happening and YES I would be just as nervous as you, no question. Monday seems too far away. You and your husband will remain in my thoughts and prayers. Could the swelling be lymphodema(sp) that I've read about? You can PM me if you would like any time or call. I think you have my number. God Bless, Kathy

[Margaret]

I have no idea what lymphodema is...I should look that up on the internet and pray that I don't see anything too scary .

I have been told blood clots in the upper body are not as concerning as ones in the lower body. But knowing his jugular is blocked causes me concern.

Thanks guys...if you think of anything else, let me know.

M

[mercyriver]

Hi Margaret,

We are almost in the same boat....not quite, but close. I am not sure if you caught the post about my husbands heart problems, we still only have a name for his tachyarrhythmia, he has arterial fibrillation. It puts him at an increased risk of strokes. So he is on warfarin as well as a beta-blocker. Arterial Fibrillation puts him at a 5 fold increased risk of stroke from blood clots.

We still don't what is causing the arterial fibrillation.

Anyhow, he went yesterday to get his blood clotting time checked. He is on 5mg of the warfarin, and it basically did nothing, normal is 1 and his blood was at 1.2, they want it to be above 2. So I know all about that. They are upping his dosage of warfarin now.

If you can get him to see his regular doctor or even get into see a cardiologist, it does have to do with his circlutory system after all.....I know I am not a Dr, but he needs to be on a blood thinner if he is still getting blood clots.

And if you think he has one now, you really should get him in today with his Dr or to the ER.

Hope everything turns out well.

Becki

[Margaret]

Becki,

Thanks for the information. And like your husband, my husband's blood numbers were around 1 to 1.2...and they still took him off the thinners.

Our cancer center is Rex ongology and hemotology. So they also deal with blood disorders and such, so I felt we were in good hands in regards to the clots. But I am still questioning why they would take him off the thinners. I do know that long term the blood thinners are not very good for you and they did not want him on them longer than 6 months. He was on 5mg and it was not helping at all.

The doplar on Monday will show us, a lot like an untrasound for those who have never had one, where the blood is not flowing. They will mark all the clots and let us know how many are in there. In Sept, when he had his last doplar, there were clots everywhere.

Margaret

[mstlyn]

Margaret and Boyce,

As if you don't have enough to deal with! I have no experiece with blood clots, lymphadema or anything related so I can't help at all.

I sure hope they get to the bottom of it fast though.

Let us know whats going on please.

Prayers and Hugs,

Tammy

[Amy]

I don't know if this could be the same thing, but while my son David was undergoing chemo his oncologist had him receiving neupogen injections to increase his white blood count. After the chemo was over he still had to receive a few more injections. I believe he got injections for 10 days with each round of chemo, and he had 4 rounds. When he went to the urologist to consult about a possible RPLND, he had bloodwork done and the urologist said that his white blood count was way too high and that he had been overdosed on the neupogen, which could cause blood clots. Luckily we never saw signs of clotting and his white blood count eventually normalized without blood thinners, but that was very scary to me. Do you think the neulasta injections could be causing this in your husband?
Amy

[Margaret]

Thanks Amy for asking about us. Boyce has not had Neulasta since chemo, which ended in Novemeber....before RPLND.

[Margaret]

Boyce went in for the dopplar and this is what the man who was doing it said.."I can't tell what is wrong, all I can tell you is that nothing in your arm/neck looks normal to me".

He went back into the cancer center to talk to our oncol. and he was busy and said he would call him later and talk to him about the dopplar.

So we really know nothing....I bet you are asking yourself...'then why did she even bother to post?'...all I can say is in a strange way it made me feel better . I will keep you posted.

Margaret

[Karen]

I bet you are asking yourself...'then why did she even bother to post?'...all I can say is in a strange way it made me feel better . I will keep you posted.

Margaret

Just getting your thoughts out can make a difference. Sorry to hear you are kept waiting, and waiting, and waiting. Another small step forward to finding out what's going on. Please let us know what you find out. We're here for whatever you need!

[Already Bald]

Margaret,
Try not to be discouraged by the technician, I had one xray tech tell me I had pneumonia! She was clearly way off.
Hang in there.

[dadmo]

Margaret:
You post here because we understand.

[mercyriver]

Did they actually say nothing looks NORMAL?

Boy that would be frustrating!

Two weeks later we still don't even have an idea what is causing my husbands AFib...they aren't even calling us with results of anything yet....frustrating...

It almost always helps to talk about it!

Becki

[Fed]

Techs are not M.D.s. They may have experience, but that doesn't qualify them to make any conclusive assessments. And no worries about posting. Airing things out can put things into perspective.