Neurological problems/ RPLND to come

[starjayroman]

Has anyone else had neurological problems due to their chemotherapy? My Jay had an orchiectomy at the end of June 08 and then had BEPx4, the strongest dose his doctor had ever given because he wanted to "cure" him and he had very aggressive cancer, mixture of non-seminona and seminona. They thought at first stage 2c bulky because his tumor in the abdomin was 8x6cm but then they sent him for another CTScan and found out he had a similar tumor in his chest lymphnode. The doctor told us this in the hall, Jay said he had a lump by his neck and the doctor said that was TC as well. He said Jay was stage 3 and the next step would have been in the blood stream and he would probably die within the month if he had not sought help.

Anyway, CTScan done after chemo showed mass 3x2cm left in abdomin and around 1cm left in chest. Waited four more weeks did another ctscan no change in size of tumors. But he does have moderate degenerative changed in the spine and when he puts his head forward he feels a shock in his feet. Doctor not sure what that is, sending him to see neuroligist and then back to him to set up preop surgery to take out abdominal mass and most likely the kidney with it. Doctor asked if he could keep CTScan to show to the other doctor who are the TC team. I thought no. Not really. Doctor worried about all the complications possible it seems because of bleomycin, neurological problems, and Jay already has a scar from his appendix being taken out. RPLND will be done within the next month and a half. Has anyone else had neurlogical problems or degeneration of the spine because of their TC and/Chemo or any other aspects of this terrible disease?
Crystal

[richy77]

The symptoms you mention sound very similar to what I had after 4xBEP. Movements forward of my head would result in a sort of electric pulse being sent down my body to my feet. It was very disorientating and worrying. I discussed it with my doctor and he mentioned it was Lhermitte's sign. I was told it would disappear after 6 months and was a result of the chemo.

I'm now 6 months on and the sensation has now gone away. The symptoms you discussed sound identical. Bear with it - it is a horrible sensation but it will pass.

[starjayroman]

Well,
Thank you for the information.
Jay had a visit with the Neurologist on Thursday. He went to get an MRI the same day and got the good news, bad news call today.

Good news: he doesn't have cancer in his spine.
Bad news: He has tightness in his spinal cord and a benign spine disease.
Find out more on Monday.
I think it might be Stenosis, that is what the urologist and the neurologist thought.
Dang,
Never thought I would learn do much about Doctors in my life.

[Already Bald]

Never thought I would learn do much about Doctors in my life.

I know what you mean...

Starjay,
I'm sorry to learn about the spinal disease.
I hope Jay can get relief soon.
Did you write in another thread that this may delay the RPLND?
If that is the case, I would highly recommend researching second opinions.
Wishing you both a Happy Holiday!

[starjayroman]

Yes, the Neurologist said this needed to be taken care of first. I am trying to get Jay to call the Doctor today, as he is supposed to and he is resisting.

With the RPLND, he had said he wanted it done in January because then at least he knew he would live another year. He is having problems with "male" issues as well, that it feels different now. With the RPLND, the urologist said that he would have retrograde ejeculation which scares him as well.

He says people ask him how he is doing and he says what can you say to that? When first diagnosed he said "What am I a guinea pig, in this life." When he was twenty, his appendix burst and his best friend brought him to emergency, if he had not gone he would have died then. Do they put a catheter in? Because that is another thing he is not looking forward to.

I wouldn't know where to start to get a second opinion. I don't even know if I could get him to do it. From the boards on here, I do think it would be a good idea. He said he didn't know if the oncologist f**ked him or if the urologist is going to. He is 47 years old.

[dadmo]

Star:
Use the man issue as a way to get a second opinion. Retrograde ejaculation may be avoided if the RPLND is done by an expert, that idea alone may get him interested. Dr. Sheinfeld at Sloan Kettering is a master with this operation.

[starjayroman]

Dadmo,
Thank you. I will try.

[starjayroman]

He has narrowing of the spine in his neck. The doctor wants to do surgery. Jay says he is not signing anything because if he becomes paralyzed he doesn't want to worry about the bills like we are now. They won't do any surgeries if he doesn't sign papers. He said when his appendix came out he lost the feeling in his legs and arms.

They set up an appointment to do an EmG on January 22nd. Now the question is, will he have an RPLND first or will he have to wait on the neck surgery? Considering he has had BEP*4, what kind of complications will he have for either. Without the neck surgery he could become paralyzed and with it he could become paralyzed, he could die. He has a preop with the urologist on Dec. 30th. Two possibly, three surgeries. What the heck is up with that? It makes me wonder if they are just using him as a guinea pig.

[starjayroman]

I asked him if he would consider getting a second opinion from another doctor.

He said No.

End of discussion.

[Les' Mom]

Dear Sweetie,

Les always felt like they were practicing on him. The best thing for him was to let him process what the doctors said without talking about it. Also, you guys need a second opinion, I wish your husband would reconsider. I believe that if we had not gone for a second opinion with Dr. Einhorn, I would have lost Les alot sooner.

Much love and hugs,
Pam

[S L]

I agree with Pam. Get a second opinion. Doesn't mean he has to follow it or have anything done but it sounds like things may have gone awry.

Cheers,
Steven