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]

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 :eek: .

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 :rolleyes: . 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 :rolleyes: . 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.

[Margaret]

If you guys were here in person, you would get sick of my hugs.

[Margaret]

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

The quote was "NOTHING looks NORMAL in your arm/neck" :eek:

[Mom]

Margaret it is important that you post. When you share, we learn. We also care. Jeff had blood clots while on chemo. They were in the same arm as his chemo IV. His hand/arm swelled so bad that he couldn't slip on his watch. He had the shots in his stomach too and I swear that the bruising on his stomach was apparent for over a year. They used the blood thinners throughout his cycles but it cleared up as soon as he was done. I know several people on blood thinners but it is because of heart disease and they come with their own risk. So I can understand why the doctors would not want Boyce on a blood thinner at this stage but it might be prudent. What does his blood work show? Dianne

[Margaret]

Our Oncol. called back to say that he is not concerned. He said that he thinks that Boyce has cronic DVT (clotting issues). He told us since Boyce had such a major issue with it, it is likely that his body is just adjusting to this problem.

He said he can take Advil, 600 mil up to 3 times a day for discomfort. Which his stomach is not in the best shape after chemo and I am not thrilled with him taking so much advil.

I just love the last thing the doctor said "manage the best you can".

UGH :cool:

Margaret

[Margaret]

Margaret it is important that you post. When you share, we learn. We also care. Jeff had blood clots while on chemo. They were in the same arm as his chemo IV. His hand/arm swelled so bad that he couldn't slip on his watch. He had the shots in his stomach too and I swear that the bruising on his stomach was apparent for over a year. They used the blood thinners throughout his cycles but it cleared up as soon as he was done. I know several people on blood thinners but it is because of heart disease and they come with their own risk. So I can understand why the doctors would not want Boyce on a blood thinner at this stage but it might be prudent. What does his blood work show? Dianne

His blood work shows that he is at 1.5 and he should be at 2.0...but what that really means...I am not sure. He has been on injections in his stomach for about 2 months and then he had been on blood thinners for almost 6 months. Boyce's arm, neck, and chest have been swollen. There have been times it was so swollen that I could not find his elbow...but right now, it is not as bad. But his arm and fingers are about double their normal size.

I am not sure if I answered your question.

What I found about DVT

Arteries bring oxygen-rich blood from your heart to the rest of your body whereas, your veins are the blood vessels that return oxygen-poor blood back to your heart. You have three kinds of veins. Superficial veins lie close to your skin, and the deep veins lie in groups of muscles. Perforating veins connect the superficial veins to the deep veins with one-way valves. Deep veins lead to the vena cava, your body's largest vein, which runs directly to your heart. Deep vein thrombosis (DVT) is a blood clot in one of the deep veins. Usually, DVT occurs in your pelvis, thigh, or calf, but it can also occur less commonly in your arm, chest, or other locations.

DVT can cause sudden swelling, pain, or a sensation of warmth. DVT can be dangerous, because it can cause a complication known as pulmonary embolism. In this condition, a blood clot breaks free from your deep veins, travels through your bloodstream, and lodges in your lungs. This clot can block blood flow in your lungs, which can strain your heart and lungs. A pulmonary embolism is a medical emergency. A large embolism can be fatal in a short time.

It can sometimes be difficult to recognize the symptoms of DVT. However, the condition can be effectively treated once your physician diagnoses it. DVT can develop in deep veins of the upper extremities (4 to 13% of DVT cases

[Margaret]

The doc called back tonight and due his DVT condition and the fact that he flies a lot for work, they are going to fit him with an arm sleeve. Other than that, we are just supposed to watch it.

Thanks for the support today guys!! Hate to sound like a drunk at a frat party...But I really do love you guys! :p

M.

[mstlyn]

Our Oncol. called back to say that he is not concerned. He said that he thinks that Boyce has cronic DVT (clotting issues). He told us since Boyce had such a major issue with it, it is likely that his body is just adjusting to this problem.

He said he can take Advil, 600 mil up to 3 times a day for discomfort. Which his stomach is not in the best shape after chemo and I am not thrilled with him taking so much advil.

I just love the last thing the doctor said "manage the best you can".

UGH :cool:

Margaret


Sometimes the answers we get are just so vague and its not easy to just accept and watch.

I sure hope that everything will return to normal very soon,and you two can get out and enjoy something normal together, and find some peace of mind.

Hugs to you both,
Tammy

[Margaret]

Thanks Tammy. Did you get the new markers for Anthony yet? How is he doing? You holding up okay?

[emilyalex]

Margaret - has anyone ever mentioned putting in what is called an IVC filter for Boyce? My husband has had a horrible time with clots/DVT, has had 3 bad ones so far and blood thinners don't seem to work with him. They put in the IVC filter and it is supposed to help keep clots from making it to his upper body. He's tried Warfarin/Coumadin, Lovenox and Heparin. None of them do the trick, so this filter is apparently supposed to make a difference. He's had it for almost 3 weeks and so far so good.

Hope this helps. If you need any additional info, let me know.

Emily

[Margaret]

Margaret - has anyone ever mentioned putting in what is called an IVC filter for Boyce? My husband has had a horrible time with clots/DVT, has had 3 bad ones so far and blood thinners don't seem to work with him. They put in the IVC filter and it is supposed to help keep clots from making it to his upper body. He's tried Warfarin/Coumadin, Lovenox and Heparin. None of them do the trick, so this filter is apparently supposed to make a difference. He's had it for almost 3 weeks and so far so good.

Hope this helps. If you need any additional info, let me know.

Emily

This is good and interesting info. Boyce has taken Warfarin/Coumadin for 5 months...and before that he has done weeks of Lovenox injections (in his stomach). Nothing has really fixed the issue. Now that we have been told he has cronic DVT, he will deal with this for a long time to come. He is getting his compression sleeve fitted next week. I will ask about this filter because it sounds like both our husband's have had the same issue.

Thanks :)

[mstlyn]

Sometimes the answers we get are just so vague and its not easy to just accept and watch.

I sure hope that everything will return to normal very soon,and you two can get out and enjoy something normal together, and find some peace of mind.

Hugs to you both,
Tammy

Hi Margaret, thanks for asking. We got the new markers yesterday and his afp is still elevated @ 9.4

hcg is still normal

[mstlyn]

This is good and interesting info. Boyce has taken Warfarin/Coumadin for 5 months...and before that he has done weeks of Lovenox injections (in his stomach). Nothing has really fixed the issue. Now that we have been told he has cronic DVT, he will deal with this for a long time to come. He is getting his compression sleeve fitted next week. I will ask about this filter because it sounds like both our husband's have had the same issue.

Thanks :)


Yes!! Good thing emily came along and read this.. I wonder why Boyce's doctors didnt think of using the filter??

Hope that will be an option for him.

Emily, how are things going with you?

[Margaret]

Hi Margaret, thanks for asking. We got the new markers yesterday and his afp is still elevated @ 9.4

hcg is still normal

What do his doctors say regarding the AFP?

Thinking of you.

[mstlyn]

What do his doctors say regarding the AFP?

Thinking of you.

His oncologist just said that it doesnt make sense (comparing the numbers of the last several blood draws) and he is going to call the lab to see what is going on.

He said that when markers are up they dont do surgery, but then...

The surgeon is the one that told me about his afp being elevated to begin with, and he still scheduled surgery.

All I can do is wait some more to see what they say and if they go ahead with surgery. His next blood draw will be on may 29th, along with another CT scan.

Thanks Margaret, I am thinking of you and Boyce too..

Tammy

[Margaret]

Tammy, I know this must feel like a roller coaster ride. First of all, I am sorry that his numbers are up and I hope it is just an issue with the lab (although I would be ready to kill someone if they made those kinds of mistakes). Secondly, our doctor does not do RPLND when the numbers are elevated, but I have a feeling that some doctors do. I will be sending lots of prayers your way. Let me know if there is anything I can do.

M

[mstlyn]

Tammy, I know this must feel like a roller coaster ride. First of all, I am sorry that his numbers are up and I hope it is just an issue with the lab (although I would be ready to kill someone if they made those kinds of mistakes). Secondly, our doctor does not do RPLND when the numbers are elevated, but I have a feeling that some doctors do. I will be sending lots of prayers your way. Let me know if there is anything I can do.

M


Margaret, I doubt that it's an issue with the lab because the last two were done in different places. U of M on May 4th was 10.8

And the usual place on May 16th was 9.4

What is the reason your doctor will not do RPLND when AFP is elevated? I see that some people have had RPLND when AFP was elevated, and the surgery fixed the problem. Did your doctor give the reason for not doing it?

Not sure what to do here since surgery day is fast approaching? Maybe if the AFP is still elevated when he has it done on May 29th, the surgeon will decide not to do the surgery anyway??

[Margaret]

Margaret, I doubt that it's an issue with the lab because the last two were done in different places. U of M on May 4th was 10.8

And the usual place on May 16th was 9.4

What is the reason your doctor will not do RPLND when AFP is elevated? I see that some people have had RPLND when AFP was elevated, and the surgery fixed the problem. Did your doctor give the reason for not doing it?

Not sure what to do here since surgery day is fast approaching? Maybe if the AFP is still elevated when he has it done on May 29th, the surgeon will decide not to do the surgery anyway??

Tammy,

Here is a link to a very good site explaining in nice detail RPLND. It does talk about the link between AFP and RPLND. I was shown this site when we were making our choices. I hope it helps and of course I feel more comfortable letting the site do the talking since they know more than I do.

http://tcrc.acor.org/rplnd.html

Call me if you need to talk or if there is something I can do to be helpful.

[mstlyn]

Margaret,

Have you learned any new information about Boyce? Did you get a chance to talk to the doctor about the filter?

If so, what did he/she say?

How is Boyce feeling?

Tammy

[Margaret]

Margaret,

Have you learned any new information about Boyce? Did you get a chance to talk to the doctor about the filter?

If so, what did he/she say?

How is Boyce feeling?

Tammy

Asked the doc about the filter...he did not say much :confused: But Boyce is getting fitted for the compression sleeve on Wed. Thanks for checking on us!

[mstlyn]

Asked the doc about the filter...he did not say much :confused: But Boyce is getting fitted for the compression sleeve on Wed. Thanks for checking on us!


Hey Margaret,

I'm not sure what the compression sleeve is; will have to go back up to read again about that.
How is Boyce feeling?

[Margaret]

He is feeling pretty well, he never complains about anything.