Road block

[Margaret]

Happy birthday sweet pea...I am so sorry for this news. I sending prayers and best wishes for you to find a doctor that will help you through this maze.

Hugs!!

[Racing for life]

ok, here we go. A spot was revealed on his pet scan in his left lung. Aparently there was a spot on his left lung on his last PET scan only it did not light up. BUT, last time when he had a PET scan they did not make him lay down to let it go through his system before they preformed the test. They did not check his sugar levels to make sure they were in range. So... we really don't have anything to say for sure that the spot that was there before shouldn't have been lit up then as well. Next, the mass that is left from the deflated "basket ball" in his stomach is still 6 cm but is not lit up. So, it could mean that it is dead, it could mean that he actually has more than just seminoma, it could mean it was more than just in his testicle and was in his abdomen as well as his lung. I don't know what to make of it all!!! I am scared, angry and confused! So now we wait. Wait to see what the radiologist has to say about the spot. Is it the same spot or a new spot and how big and where at exactly! And we also wait to see if our doctor can get an answer from Lance Armstrongs doctor in Indiana. Part of me wants to think this is a totally different spot that is a lung infection because it is cold and flu season and another part says CRAP they told us they didn't have a big enough sample when they sent it to Mayo clinic when this all started and we should have demanded they get a better sample rather than just going in and taking the testical and going from there. Can you have one kind of germ cell cancer in your testical and another kind be in the mass in your stomach and in your lung? I just needed to vent. My husband wants to just shrug it off and see what happens and I can't just set back and take it. Thanks for listening.

PS, this isn't what I wanted for my birthday

[Karen]

Wow...just caught up on these posts. I'm glad he's being looked at for all this. I can't answer your questions, but I can definately send prayers.

[Racing for life]

Well my husband is in the PET scan right now so we should know something either yet today or by the morning. His regular oncology DR is out of town and we have another guy dealing with all of this. This DR is saying that we might have to do radiation on the left over tumor if it is in fact dead tissue and not active cancer. Has anyone had any experience with doing BEP and then radiation? I have read that they suggest the radiation and then the chemo. I have also heard that radiation is bad stuff. I guess his mass in his stomach started out around the size of a basketball (they never told us that when we had the first CT) so I can see it only shrinking just so much and then there would be residual left over. Any help on this radiation thing would be great!

[Scott]

Thank you for you prayers!

We'll keep them coming for you!

[Margaret]

Got to the hospital and his blood was at 12 and they want the thickness to be a number around 2 or 3 so he got two units of plasma and it only took 3 nurses, one life light nurse, two hours, and seven tries to get the iv started (ouch!). His count was at 2.9 last night and they ran a CT scan and can not tell from it why he is swelling. PET scan is next to see if he has a blockage (as he alread has three clots) to see if that is why he is swelling up. So at least he is not bleeding internally as far as they can tell at this point. I will update more after the PET scan on Wednesday. Thank you for you prayers!

I am so glad you called...I will keep saying prayers and please let us know how he is doing.

[Racing for life]

Got to the hospital and his blood was at 12 and they want the thickness to be a number around 2 or 3 so he got two units of plasma and it only took 3 nurses, one life light nurse, two hours, and seven tries to get the iv started (ouch!). His count was at 2.9 last night and they ran a CT scan and can not tell from it why he is swelling. PET scan is next to see if he has a blockage (as he alread has three clots) to see if that is why he is swelling up. So at least he is not bleeding internally as far as they can tell at this point. I will update more after the PET scan on Wednesday. Thank you for you prayers!

[Russell's Mom]

Glad you are getting the attention that you deserve!! Hope all is going well, Sharon

[Margaret]

Well. I called the Doctor this morning and his nurse called me back. She told us to get water pills from the Rx and try them. My concern is that he is already on blood thinners from some clots they found in his abdomen from where the tumor was located. My husband says that his legs ache. I think when the nurse calls back with his pro-time (blood thickness??) that I wll tell her how concerned I am about the swelling and such.

Break in news. Call from Dr. We are heading to the hospital pronto! I will update later.
bye

I am thinking of you....saying prayers all is well..

[Racing for life]

Well. I called the Doctor this morning and his nurse called me back. She told us to get water pills from the Rx and try them. My concern is that he is already on blood thinners from some clots they found in his abdomen from where the tumor was located. My husband says that his legs ache. I think when the nurse calls back with his pro-time (blood thickness??) that I wll tell her how concerned I am about the swelling and such.

Break in news. Call from Dr. We are heading to the hospital pronto! I will update later.
bye

[boyce]

Please don't wait on getting the swelling checked. My pain was severe enough that I did not sleep and my right arm swelled to where my elbow no longer existed. They did an ultrasound and I had DVT (Deep Veinal Thrombosis) caused by the port-o-cath and chemo. I ended up on blood thinners and it was very manageabe.

Even though my juggular vein was clogged, they were not nearly as concerned as if the clotting was in the legs. Please getthis checked out at once and make sure that it is Not clot.

Chemo is miserable enough without added complications, so he'll feel better once whatever is causing thsi symptom is diagnosed, OK?

And let us know what you find out!

[Margaret]

We got approval! I used your advice (plus I made it more personable to our case worker that over views our inurance claims) and they came back with a yes! We have a PET scan on 12/3 and meet with the oncologist on 12/6. If we have good news then we get the splint in his kidney removed and he can start back on the road to recovery!

I do have one question that I hope you all have encountered (and which would make this normal). Matt, my husband, is experiencing swelling in his legs and hands. We have been at the hospital all weekend with his grandmother, 2x suvivor of breast cancer ( I married into some great fighters!), and Matt was walking funny and said his lower legs hurt. When we were setting in the waiting room I looked at them and I could not even make out his leg bones. This man is maybe 155 on a good day so he should be all but skin and bones! Is this swelling normal? He has had neupogen shots for 4 days in a row both last week and the week before. Could it be from that? Any helpfulness on this would ease my worried mind until we can get information from our docs!

This concerns me!!!

Boyce has this same exact thing and they found out it was blood clots. I am not a doctor of course, but eveything you are describing sounds like the issues he was having before they found out what it was. The funny thing about your post is that Boyce too was having neupogen shots before the swelling and thought they were related. He would say "Gosh margaret, these shots are killing me, that needle must go really deep"....it was not until we could not see his elbow anymore that it occurred to us that it may be something else.

One other thing that Boyce noticed was all of his veins looked like they were closer to the skin and they were very blue and pronounced. If he does not have this, it could be fluid. Again, I am not a doc.

I hope it is nothing but call the doctor please.

[Fed]

I am very glad you got the PET scan issue settled with the insurance company. This is one of the cases in which a PET/CT will actually be useful. I am hoping that nothing lights up!

As far as the swelling, I will venture a guess here (and it's only a guess; I'm not an M.D.). Do you think it could be related to fluid accumulation related to the kidney stent he received? I saw you noted that in your signature, so I thought I'd ask. Of course, this is likely a question for the urologist.

[Russell's Mom]

Great news on the approvals!!! Gives me faith in people being there for people...as it should be. It is curious to me why we fall asleep to another human being in need. Working as a nurse, I would rather have someone sort say...ah..hmmmm to me, if my attention is wandering away from them. I feel much better driving home knowing I have helped instead of hindered. Regarding the swelling. I have not heard of swelling with Neupogen. If it was me I would call the doctor right away ...even if it is an odd hour. Someone will be on call and you can get suggestions from an expert. I am not bashfull at all about calling with questions. People who love to help don't mind the calls and feel good about helping ease your mind. You deserve peace of mind if nothing else. Take care, Sharon

[Racing for life]

We got approval! I used your advice (plus I made it more personable to our case worker that over views our inurance claims) and they came back with a yes! We have a PET scan on 12/3 and meet with the oncologist on 12/6. If we have good news then we get the splint in his kidney removed and he can start back on the road to recovery!

I do have one question that I hope you all have encountered (and which would make this normal). Matt, my husband, is experiencing swelling in his legs and hands. We have been at the hospital all weekend with his grandmother, 2x suvivor of breast cancer ( I married into some great fighters!), and Matt was walking funny and said his lower legs hurt. When we were setting in the waiting room I looked at them and I could not even make out his leg bones. This man is maybe 155 on a good day so he should be all but skin and bones! Is this swelling normal? He has had neupogen shots for 4 days in a row both last week and the week before. Could it be from that? Any helpfulness on this would ease my worried mind until we can get information from our docs!