more waiting

[Karen]

Tammy,
I agree that they should have checked him from head to toe on the 29th. I can't even imagine the frustration you feel, but as a mom I know you're fighting with every molecule of your being for Anthony.
I am praying that you get some answers today and they move forward with wiping this out once and for all. Take care of yourself as best you can too.
karen

[mstlyn]

First I want to thank everyone for their encouragement, and support.

Here is where things stand now.

First we were called in for our appointment with Dr. Smith (U of M oncologist).
He explained that at first they were going to go ahead with surgery, and then after they talked with Dr. Danish about his concerns that if the cancer is someplace that they dont see, and they proceed with surgery, Anthony may not be able to get his chemo and it could quickly spread/

Dr. Smith said the more they talked the more he thought that maybe they were being too aggressive rather than more careful, and decided that yes maybe it would be best to do more chemo first.

He then went on to explain to Anthony that he won't have to come to U of M for the infusion, and that Dr. Danish said "he thinks" they can handle that down here (near home). He then went on to explain to anthony the type of drugs he will be getting yada yada ... as if they went ahead and made their decision and did not give us a choice in the matter.

So I asked him ... If the tests come back clear, why go for chemo instead of surgery? He told me that he will have to have more chemo either way they do it. He said that even if they do the surgery first, it is standard to give chemo just to make sure everything is gone.

He then went to get Dr. Hafez and I asked more questions. They did a physical exam of the remaining testicle and decided they didnt need an ultrasound. Then they sent him to get a CT scan of his head. That came back clear.
Questions about why Anthony has started vomiting again are a concern. We just dont know what is causing it. It recently started again, and at first I thought it was the dye from his scan the other day. Well he did it again when he got up this morning. No nausea, but a feeling in his throat, and what he said were like dry heaves.

He said he had to stick his finger in his throat to accomplish anything. Then when we were almost at the hospital the nausea started and he thought he was going to vomit, but he didnt and the feeling passed. Then it stopped for the rest of the day.

Same thing the other day.. only in the morning he was sick and then it was gone. Im lost on what is going on there and so are the doctors.

Well, in the end; Dr. Hafez said that its 3 in favor of surgery and only 1 that disagrees; meaning Hafez, Smith, and Einhorn say surgery and Danish says chemo. Well, Smith went along with the idea of chemo too and like I said he told me that Anthony will have to have more chemo either way. What do you all have to say about this? Is that how this thing will go?

Dr. Einhorns emails state that the hope is that surgery will be curative, and that IF he has another relapse they will go to high dose (tandem).

Surgery is rescheduled for Friday the 8th

[mstlyn]

Einhorn said clearly , 3 times. " repeat CT-scan of head and chest. If clear procede to surgery."


Dr D obviously said something to them to give them pause. They should listen to what he says, as he is the one who has been treating him, but doesn't mean they agree. I think they are being extra careful. which is good.Quite possible too they are being extra careful as they know Dr Einhorn gave his 100 dollars to this.

I think it is also a good sign that " everybody at U.M has been talking all morning about Anthony's case". Their approach to treating Tc is a "team effort" . They said from the start that "they all review and work together on these types of decsisions" so you have 5 very good Drs looking at this, including Dr S's suggestion of Dr Lee.

They need to rule out other sources, for sure, but if they do, he is going to have the surgery.

I asked her to get the films and such so that they could be sent here . Everyone from the top down has expressed strongly that they will assist in everyway possible. ALL are very experienced with Tc ( except for the director, he is Breast cancer, but an expert at it) and would be glad to review everything.

hopefully the view will be better after later today.








He pretty much said this yes. His exact wording was that "IF everyone agrees with surgery" after getting an all clear on the tests .. we will then go ahead and reschedule. I'll find out today .. is he telling me that if anyone is in disagreement, he wont do it?



How do I go about doing this? Will they do it at U of M if I request it?

[/QUOTE]

Yeah and with everything that was going on I didnt ask about the disks. I will call them and ask them if they can do that and send them out to the doctors that will look at them? Get with me on this and let me know what I have to get together. I have most all of the reports for markers, the first ct scan after diagnosis, and the ct scan after chemo. Will the reports be helpful? Even though we are back on for surgery, I would still like more opinions and advice, and especially now that I have been told he will have to have chemo either way.

[Russell's Mom]

difficult days

It's been a while...have seen some difficult days myself. The waiting is beyond torture and then decisions made without you. It is so deflating when you are the one holding the emotion and the energy for your son. When we had to wait for Russell's surgery, we were told that if chemo was needed, wait times would not be the biggest factor. If the cancer is there, it will need to be treated once again. There was the concern of different cancers because of Teratoma. Are the doctors looking at other possiblities? The other concept that I understood was that the post-chemo RPLND should be done with the idea that everything residual be removed, rather than running the possiblity that a second surgery might be needed if more lesions were discovered. Personally and as a nurse, I think it is a good idea that the doctors have put their heads together and are not rushing into a move. The complex situation and treatments need to be well thought out with all of the unusual possiblities that may be sitting out there. One doctor who helped me, from the hospital that I work in, would throw out ideas late in the game. She is excellent, but the puzzle can be difficult to solve.
Russell will have a high resolution CT on the 6th. We know for certain that all of the residual lesions were not removed because of the Bleomycin toxicity. Sometimes I wonder how many times I will be able to face waiting for the results. Still I see that Russell looks to me for support, prayers answered, I find a new energy and reflect to him that we are strong and that we are survivors. Will pray for energy, strength and clear thinking for the doctors. Take care, Russell's Mom, Sharon

[Scott]

Surgery is rescheduled for Friday the 8th

Sounds like a plan!

[dadmo]

Tammy:
There are so many here that are better with the medical stuff then I am that I'm a bit hesitant to jump in but let me give you my take on the situation. If it were my son I would I would go for the RPLND. Here's my reasoning, they know that active cancer is alive in him someplace. Based on all the test (and he has had a lot) the cancer doesn't appear to be in the head, lungs or any other organ. We know the lymph nodes are involved so my guess is that the live cancer is hiding there. What I want is for the primary cancer to be removed (the nodes) and then clean up the whole rotten stinking mess with some chemo. Get this thing done and start living life as a survivor and co-survivor and not as a patient.
If there is anything I can do all you need to do is ask. 201-445-2532

[jennys]

Hi Tammy,

Sorry I haven't responded sooner, especially how you have been there for me....

I know how you feel with the frustration of questioning (and sometimes quite rightly) that the doctor's might not be as proactive as yourself in your loved one's health, but I also feel you know deep down that this sort of focus is not good for our mental well-being it drives us NUTS....lol.....

Gerrard wasn't offered RPLND after his chemo or before.... and I often thought why don't they follow US protocol because I was always reading on this site that it was the norm....we were told afterwards that the reason being is that he had too many tumors for this to work.

I feel Tammy that you will know in your heart what way to go and based on that you will make the rest happen....

I am thinking of you and hoping for the best for you and Anthony

Let me know if I can help you in any way whatsoever

Jenny

[Karen]

Tammy,
What a rolller coaster! I can't add any advice but I am sending a big hug and, as always, my prayers for kicking the s#*t of of this (God is used to my language )

We are all supporting you and Anthony in any way we can.

[Scott]

Tammy, I know it's really hard to stay away from "what if," but let's stand firmly behind "what is." Anthony is getting expert care, and you and your doctors are fighting hard together.

[Fed]

Tammy,

I've been out of town, so I'm slowly catching up with everything. Suffice it to say, with a Mom like yourself, Anthony is in great hands. You are an example to many here, and the way you are dealing with this is commendable. Let's now kick this to the curb! We're pulling for all of you!

[mstlyn]

Oh man, you all are like a big shot of TLC and encouragement in both arms, and dare I say both sides of the hind end!

This is just too beautiful for words, but my heart and soul have been touched in a very special way. God Bless All of YOU!

I am back in fight mode again, and Im sorry I let everything get me down like that.

Robert called and talked to Anthony, and I heard a much lighter tone in his voice afterward. Thank you for that Robert ..

Dadmo I got your number, thank you for that too. I just know that God has special plans for all of you here. People that care and give the way you all do, are angels on earth.

Much love to everyone ...

[mstlyn]

Tammy,

I've been out of town, so I'm slowly catching up with everything. Suffice it to say, with a Mom like yourself, Anthony is in great hands. You are an example to many here, and the way you are dealing with this is commendable. Let's now kick this to the curb! We're pulling for all of you!

Fed, this is one of the nicest things anyone has ever said to me, thank you. I'll bet you have always been a great son!

Kick it to the curb, we're ready!

[mstlyn]

Tammy, I know it's really hard to stay away from "what if," but let's stand firmly behind "what is." Anthony is getting expert care, and you and your doctors are fighting hard together.

You're right, no more
"what if's"

but what if ...

kidding! Back in fight mode .. thank you, Scott!

[mstlyn]

Tammy,
What a rolller coaster! I can't add any advice but I am sending a big hug and, as always, my prayers for kicking the s#*t of of this (God is used to my language )

We are all supporting you and Anthony in any way we can.

Yes, I think God understands too

Thank you for the prayers!

[mstlyn]

Hi Tammy,

Sorry I haven't responded sooner, especially how you have been there for me....

I know how you feel with the frustration of questioning (and sometimes quite rightly) that the doctor's might not be as proactive as yourself in your loved one's health, but I also feel you know deep down that this sort of focus is not good for our mental well-being it drives us NUTS....lol.....

Gerrard wasn't offered RPLND after his chemo or before.... and I often thought why don't they follow US protocol because I was always reading on this site that it was the norm....we were told afterwards that the reason being is that he had too many tumors for this to work.

I feel Tammy that you will know in your heart what way to go and based on that you will make the rest happen....

I am thinking of you and hoping for the best for you and Anthony

Let me know if I can help you in any way whatsoever

Jenny

Bless your heart, Jenny. You have nothing to be sorry about .. thank you for being there, and the same to you.