Dr. Weizer??

[mstlyn]

I can ask someone about him from the CC. Hollenbeck looks like a possible also. See if he takes the insurance. I am sure there would be someone at U of M that has experience with this surgery.

I'll get back to you,
R

Hollenbeck sounds familiar. I think someone on this forum mentioned him. Isn't he the one that does the laprascopic RPLND?

Go ahead and see what you can find out about the doctor they are sending him to. Hope to hear from you soon.

Thank you

[mstlyn]

Going to sound personal, but it is for a reason. I am not sure, but he hasn't been working thru this right? If he has made less than 9,900 in the year, he should be able to get it paid for. pretty easily.


U of M is not in your county is it? what about Michigan state?

Right, he has not been working. When you say that he should be able to get it paid for pretty easily, by what means are you talking about? Medicaid?

U of M is not in my county, nor is Michigan state.

[mstlyn]

Department of human services called today to let us know that Anthony has been denied Medicaid, because they have not proven that he will be disabled for 12 months.

Meanwhile, I called the cleveland clinic this morning and they are waiting for everything to be faxed to them so they can set up an appointment to see anthony.
They said that in some cases the clinic will pick up the entire bill too.

Dorrie called them and they are faxing the HCap form to her so that we can get that done now.

They told me that if Dr. klein can not see anthony fast enough, he will have him see Dr. Andrew Stevens or Stevenson (not sure which). I asked about his experience with RPLND and she said he is from sloan memorial and that they "hunted him down" to get him. So I guess thats good news.


We are keeping the appointment at U of M this friday and I will be asking about the doctor experience there, and we will decide at that time if we want to let them do anthonys surgery, or take him to cleveland.

If we decide on cleveland, the good thing is that its only about a 3.5 hr drive from home. I just have to figure out lodging and expenses for that since dorrie said he will be hospitalized for 7 to 10 days.

[Russell's Mom]

what progress!

It is moving fast now...must feel much better for you! Any word on the CT scan? Mt Zion (UCSF) was very helpful with lists of places to stay that were walking distance from the hospital. I secured a place that was walking distance which really took the edge off. With the medical information landing in the hands of caring capable people, hopefully the unknowns will fall into place and you will get the answers that you need. I certainly understand the feeling of dealing with less than standard care. Your efforts are paving the path. Take care, Russell's Mom, Sharon

[mstlyn]

It is moving fast now...must feel much better for you! Any word on the CT scan? Mt Zion (UCSF) was very helpful with lists of places to stay that were walking distance from the hospital. I secured a place that was walking distance which really took the edge off. With the medical information landing in the hands of caring capable people, hopefully the unknowns will fall into place and you will get the answers that you need. I certainly understand the feeling of dealing with less than standard care. Your efforts are paving the path. Take care, Russell's Mom, Sharon

Well I can't say it's moving faster since it will still be a couple weeks before anything is actually done. Anthonys back pain is really weighing on me and I can't stand not knowing what is happening inside his body.
I still don't have the results on the MRI. I should be getting those tomorrow since we have to go to the urologist so anthony can sign release forms for cleveland.

Thank you, Sharon

Tammy

[Russell's Mom]

3 months

We had to wait 3 months for the RPLND because of the Bleomycin Toxicity. It is pure agony waiting. I will be thinking of you. Rusell's Mom, Sharon

[mstlyn]

We had to wait 3 months for the RPLND because of the Bleomycin Toxicity. It is pure agony waiting. I will be thinking of you. Rusell's Mom, Sharon

Yeah thats a long time to wait. Was he having symptoms of back pain or anything during that time; that made you worried there was live cancer? If so, what was causing the pain?
I would love to hear anything that can help me relax about this. I'm really worried about whats causing this pain.

[Russell's Mom]

concerns

To this day I wake up and wonder and everyday I tell the monster that stands by my bed that I will not spend time with it. Russell still has a lung lesion that they cannot operate on because of the lung toxicity issue. He had/has various episodes of confusing symtoms and finding my balance is difficult. Some days are more difficult than others. I heard a quote from Wayne Dyer that has been very helpful. "No amount of worry has ever helped to heal a sick person." I decided to honor the worry, but not let is absorb the energy that I needed/need for other necessities, researching, diet, funny movies, good conversations etc. Again, changing my mode is the hardest thing that I do everyday. Another thing that I did was to ask Russell. It is difficult, but your son will have a sense if his back pain is concerning. If it is, take him in. If the pain is getting worse, the medical facility is required to see him. Even an urgent care could help diagnose the base line pain. Muscular, urinary, oncology. How is the vomiting going? I do believe you are getting close to some of the answers that you need. I do understand a life without knowing, we are in it also. We will start to decrease the Prednisone soon, the Bleo Toxicity is as threatening as the cancer. I would trade almost anything to be spared of the next part of this road. One other thing that helped me was to understand that the treatment post chemo would not alter too much because of the time between chemo and surgery. If there was residual cancer, there would be more chemo. It would either be there or it wouldn't and that would be the determining treatment. There are a few minor variations on this, but basically chemo is the direction. And they do have very good results here also.
Take care of yourself. Let your son see his strength from the reflection in your eyes. He is lucky you are there, you are doing it!!!!! With you, Russell's Mom, Sharon

[mstlyn]

To this day I wake up and wonder and everyday I tell the monster that stands by my bed that I will not spend time with it. Russell still has a lung lesion that they cannot operate on because of the lung toxicity issue. He had/has various episodes of confusing symtoms and finding my balance is difficult. Some days are more difficult than others. I heard a quote from Wayne Dyer that has been very helpful. "No amount of worry has ever helped to heal a sick person." I decided to honor the worry, but not let is absorb the energy that I needed/need for other necessities, researching, diet, funny movies, good conversations etc. Again, changing my mode is the hardest thing that I do everyday. Another thing that I did was to ask Russell. It is difficult, but your son will have a sense if his back pain is concerning. If it is, take him in. If the pain is getting worse, the medical facility is required to see him. Even an urgent care could help diagnose the base line pain. Muscular, urinary, oncology. How is the vomiting going? I do believe you are getting close to some of the answers that you need. I do understand a life without knowing, we are in it also. We will start to decrease the Prednisone soon, the Bleo Toxicity is as threatening as the cancer. I would trade almost anything to be spared of the next part of this road. One other thing that helped me was to understand that the treatment post chemo would not alter too much because of the time between chemo and surgery. If there was residual cancer, there would be more chemo. It would either be there or it wouldn't and that would be the determining treatment. There are a few minor variations on this, but basically chemo is the direction. And they do have very good results here also.
Take care of yourself. Let your son see his strength from the reflection in your eyes. He is lucky you are there, you are doing it!!!!! With you, Russell's Mom, Sharon

Thanks for the encouragement Sharon. I know it has to be tough knowing theres a lesion and nothing that can be done about it, and the toxicity too. I wasnt aware that the toxicity was as threatening as the cancer. I'm going to go through your posts later on this evening to see more about your sons case..
You take care of yourself too Sharon; my prayers are with you both!

Tammy

[mstlyn]

Dr Hollenbeck is a Associate Professor of Urology at U of M who's specialty includes tc

Yes but doesnt he specialize in laporascopic RPLND?

Also, they have him set up to see that Dr. Hafez, not hollenbeck.

[mstlyn]

If you can go to the Cleveland clinic. cool. I would definately keep your appoimtment for Friday. You have to ask him about tc, and RPLND experience, but his days at CC he was known as an excellent surgeon
Dr Hollenbeck and U of M is also very good. He has experience with the operations. Detroit has alot of options. Also, wouldnt Indianna U be almost as close as Cleveland?

Everything was faxed to Cleveland today and they called me this afternoon to tell me that Dr. Klein looked over everything and he had this to say. Cancel surgery with U of M. (a date is not set yet anyway) And he can see Anthony. They said he will probably be set up for an appointment for next week. Dr. Klein said that after reviewing Anthonys reports(minus the actual CT films, I have those with me to take) it is not urgent that he gets his surgery immediately after the 6 week chemo recovery period.
I asked.. " he isn't concerned about the mass?" and she said "NO" .... I don't know anything about Dr. Klein, but I checked him out online and according to what I read it looks like he has plenty of experience. The woman I spoke to said that he has 3 RPLND's lined up to do just this week. I am ready for opinions.

Again, if he has made less than " the federal povery level" which he has because he is not working, The will get the bills taken care of. You need to talk with the social workers at either place. Basically, he needs this operation, so it's not not going to happen because of money. Its there and the LCSW know how to find it.

Get this ... they approved a cash benefit under disability, but turned him down for "disability/medicaid" ... how can he be considered disabled on one hand and not another?
Either way, we are appealing, AND, I wrote to our state representative about this and got a call from his office a little while ago.
The woman I spoke to spent a considerable amount of time on the phone with me, and she said shes going to look for all of the loopholes she can to help out; and IF she doesn't get anywhere she will speak directly to the representative about it.
I also called the Lance Armstrong Foundation to see if they could give us some guidance. They said they will be having "cancer care" and "patient advocate foundation" call us within 2 days. I know that Anthony will have surgery, regardless. I just don't want him to worry about paying this off for the rest of his life, and sometimes without insurance you can't get good doctors.

Medicaid and Social security almost 100 % denies everyone first try. Automatically. It is true that he will probably not be disabled for 12 months.

Yes, I am learning that. We are appealing

To reassure you some, most likely, as his oncologist said," he may have teratoma in there." If you look at the TCRC, you will see that it can "push " on internal organs causing pressure, and being where it is, that COULD cause back pain, or pain in the region. It could push on the diaphram and there are points where it could cause nausea.

His markers are normal. Ct-scans were clear except for the nodes. He has had an MRI, so you will just have to wait and see, but I doubt he has a brain mets. The chances of that with his situation would be pretty low. Hopefully, when you get those results, that will be clear.
Let me know which way you are going to go, so that I am not working in the opposite direction ok?

We got a lot done today and a visit to the oncologist was one of them. Anthonys back pain is on the left side, down low around the hip area. Dr. said that the mass is up high around the kidney and that would not cause pain down low.
I say he is wrong, because it could be pressing on nerves. Back

before Anthony started chemo, he didnt try to tell me that the cancer wasnt causing the pain. He told me that once he starts chemo all of that should start feeling better.

Anyway, he did send him for an xray today. He also said that if need be, he will order an MRI of his back.

Anthony also stopped vomiting for about a day and a half, and then started again last night, and again at the doctor today.
Doctor said this " he has had a lot of chemo (we are hesitant to even give the 4th round) and I think we should just give him a little time.

Well I have the MRI results and it was negative, so Im not going to worry about that anymore.

Dr. also sent him to get his tumor markers checked again, so we should have that back in a day or two.

Im just glad the MRI is clear, and dr. is checking Anthony out. I feel like I can rest more tonight.

We gathered all of his scan films today, got papers delivered UPS from U of M, the call from Cleveland, so I think we are pretty much set to go. U of M friday.. I will cancel Cleveland if I feel satisfied with what I hear at U of M, so Robert, I can't tell you yet which way we are going. I wish I knew, but until I have the opportunity to meet Dr. Hafez and ask questions ...

Hang in there. I know its hard not to worry, but I am still pretty confident this will all work out great. I have had a personal support situation of a guy who went thru the exact same thing recently. He ended up having to have the RPLND and it was teratoma. His situation was about as exact like Anthony's that it could be. He is back at work, everything is going great.

R

We're hanging in there, and I feel better today. I'm glad to hear about this gentleman that everything turned out so great for. I know they are two different people, but its still reassuring.
Thank you, Robert.

Tammy

[mercyriver]

Tammy,

I am so glad the MRI was clear.

I know it doesn't answer the questions about his vomiting and back pain, but it still has to be quite a load off you mind.

You sound like you day was very busy. You are such a great Mom!

I cannot imagine how hectic and busy your life is right now.

Still thinking of you and your son.

Becki

[Russell's Mom]

amount of work

Hope you can appreciate the amount of work you have accomplished! Hopes for sweet dreams tonight, another strong day tomorrow. Russell's Mom, Sharon

[mstlyn]

[QUOTE=Robert2112]

One other thing. i didnt understand the part where you wrote the Doctor ws hesitant to gibve him round 4 of chemo. I thought he had it.

I didn't mean it that way. The doctor was explaining to Anthony that he probably feels sick because "he had A LOT of chemo" and he just made the comment that " we hesitate to give 4 rounds" because it's a lot of chemo and probably not even needed. I think when he said "we hesitate" that he meant all doctors are hesitant about it, but its the protocol that is used.

I will let you know when I hearfrom both Drs tomorrow. It is scheduled to be a phone conference early. As it stands , I would be totally comfortable with U of M

Lots of good news today, so live in that for the momment, and I am sure ther is more to come.

I will post as soon as i hear from U M.

R

almost done.

Sounds good, Robert! Thanks once again for being there and being so helpful! I hope you get great news about Dr. Hafez, since that is the Dr. they have him set up to see.
If Hollenbeck has a lot of experience with rplnd I would like him to do anthonys surgery.
I understand that Dr. Hafez has a rep. for being an excellent surgeon, but what about with rplnd, is my concern.
Dorrie got a little information from the lady that schedules surgery at U of M, and she did say that since he transferred and whatever he is doing now that is different than before, he is being watched by Dr. Montie. Not sure what all of that means, but you may know.
I will be looking for word from you ..

Hugs
Tammy

[Margaret]

I have been gone a few days but I just saw the GREAT news! The scan was clear! How wonderful. I am sure they will solve the backpain soon and now you can put a smile on your face knowing that he is really coming up on being well. The RPLND should go really well, my hubby was feeling really well just a few short weeks post surgery. I am so happy for you that things are looking up!

Margaret