Blood Clots--Terrified Mom

[SuzanBee]

I am so thankful to have found this site. This is all new to me so please excuse me if I don't have all of the proper terminology yet. My son was diagnosed on February 9, 2018 with Stage 3. Spread to lymph nodes and lungs. We found out at that time he had bilateral pulmonary emboli. He was placed on a maintenance dose of Lovenox (blood thinner). We are fortunate enough to be at the IU Cancer Center under the care of Dr. Hanna. Because of the blood clots, his orchiectomy was delayed while he received his first round of BEP. The orchiectomy was scheduled for February 27th and he had to go off the Lovenox for 1 day prior and 1 day after the surgery.

The surgery went well but by Saturday he could not move his right leg. I took him to ER and was found to have multiple clots in both legs and a large clot in his inferior vena cava. He was placed on a Heparin drip and sent to ICU. Later that evening he was sent to Interventional Radiology for catheter placement and administered TPA and then back up to ICU. My 8:00 a.m. the TPA had to be shut off because he was hemorrhaging into his scrotum (the surgical site). Interventional Radiology took out the catheters and "vacuumed" some of the clots from the right leg and Inferior Vena Cava. They also placed a filter in the Inferior Vena Cava to try to prevent the clots from reaching the lungs...this was emergent. He was then taken to have emergency surgery to try to stop the bleeding in the scrotum...they cauterized the area and place two drains.

Fast forward a few days. We found a world class Hemotologist. Found out he is resistant to Heparin but not to Lovenox. We've spent the better part of the week figuring out the dosage that is therapeutic. Scotum remains swollen but is no longer bleeding. DVT's have rendered him immobile. Physical Therapy is working with him daily. There have been small improvements each day.

Is there anyone out there who has had severe blood clots? His oncologist said his tumor markers were good and that the cancer is beatable, but the DVT's are so scary.

February 8th my baby was a junior at Butler University and today he is lying in a hospital bed battling two serious illnesses.

If anyone is out there with a similar experience I would appreciate any thoughts or advise.

Thank you in advance

[Davepet]

I can't recall a case like this ever being posted here, so my best guess is the clots are unrelated to his TC & perhaps they just got found due to the TC scans, however, I am no doc.

Dave

[SuzanBee]

Dave thank you for responding to me.

Apparently the "experts" have told me that cancer can cause a state hypercoagulation no matter what type of cancer. He was tested for all kinds of clotting factor issue...genetic and acquired...but they all came back negative. I was also told when he was diagnosed with the two Pulmonary Emboli that one of the first things they check for in a male presenting with PE and no trauma is testicular cancer...which is how my son's cancer was discovered.

[Ann]

SuzanBee - my son developed blood clots while going thru his BEP3X. They were first discovered in his arm. They started him on Lovenox. Day two of Lovenox he ended up in the hospital could not breath. The blood clot had now gone to one of his lungs. They got that under control and wanted him on Lovenox for the next 3-4 months. After Chemo was done and he started feeling better - he forgot about taking the Lovenox for a couple of days. Ended up back in hospital blood clots in both lungs now - blood supply to lower lung being cut off from blood clots. He was in so much pain and they couldn't get it under control. Long story short he has been on Lovenox since 10/24/17 and we hope this maybe our last month on them. Doctor stated the Lovenox is the best option for cancer patients.

[SuzanBee]

Ann--I'm sorry for what your son had to go through and I thank you for the response. My son went off the Lovenox for his surgery and boy it didn't take long for him to be in serious trouble.

I hope your son is doing well now...and you too. I feel so drained emotionally and physically. As if the cancer wasn't bad enough....

[Trekga]

So sorry! My son only had port blood clots during chemo. I can't imagine how scary all this is, at least Ann here has had something similar with her son. Keeping you all in my thoughts. Update when you are able.

[juyuhu]

Hi there, so sorry to hear about your son. While the docs were still trying to figure out my husband’s cancer of origin (he initially presented with a neck node), my husband suddenly couldn’t breathe one day at work and the CT scan at the ER discovered a pulmonary embolism. He was placed on Lovenox immediately and remained on that for a total of approx six months, throughout his 4xBEP chemo and subsequent orchiectomy (took a break for the surgery). They watched it carefully throughout his treatment and although it never completely resolved (there is still a trace of it on scans), he never developed another clot, thank goodness. That was one of the scariest moments that I can recall... receiving a text from him saying he couldn’t breathe... and then not hearing from him for a few minutes. He had vomited then, and I believe that dislodged his embolus so that he was able to breathe again.

They also mentioned the hypercoagulation of the blood due to cancer and that Lovenox was the best choice bc it’s easily reversible for surgeries, etc. My husband is almost two years post-chemo, had 3b nonseminoma. Best wishes for your son as he fights this battle!

[SuzanBee]

juyuhu...thank you for sharing what happened to your husband. The clots are more scarier than the cancer at this point. I'm glad that your husband did not have a recurrence of the clots. My son is stage 3 nonseminoma...but don't know anything else yet except he is in the "good outcome" category...if we can just get past the clots.

Thank you....

[juyuhu]

My husband was in the "intermediate risk" category for Nonseminoma Stage 3B. Your son is in great hands at IU - hang in there!

-Judy