New Update

[mstlyn]

At first I was really put off by the idea of my son having rplnd, after reading about it.
Then after spending months being exposed to so many guys that have had it, I calmed down about it a bit and felt better about him having it.

Then later I welcomed it, actually couldnt wait for them to get to it, and felt better knowing that they were actually looking inside his body, and physically removing anything and everything that may be cancer, and testing nearby nodes to see if there was any spread that hadnt shown up on scans.
But then in Anthonys case, the cancer had returned after chemo, so I was very anxious for them to get to the surgery.

We received a copy of a letter from the oncologist at U of M, stating that he still feels Anthony should have more chemo since he had his rplnd. We won't do it.
Dr. Einhorn says that sometimes the surgery can cure post chemo residual disease, but another relapse should be treated with HDC, which has a higher success rate as second line chemo. It has been since June 8 that he had the surgery, and so far everything is clean.

None of these treatments are desirable by a long shot, but unfortunately there is no other choice.
I certainly do know the gut wrenching feelings you are experiencing. Just know that all of us understand, and we're here for you. ( I know you know that)

It feels good to have direction after going through so many changes and uncertainty about what is right. I hope that you will rest feeling confidant about the decision that has been made.

Prayers-
Tammy

[Jay68442]

Dr Einhorn wrote back, and as predicted, suggests the surgery. That man must not sleep!

So it looks like Monday, Oct 22, we will be up at B&W for the surgery and take it from there. What kind of time line do you think he would be out of school? We are thinking after Christmas break he would go back.

Beth

I was 17 when I had a RPLND. The first days after the operation are tough. You don't realize how important your abs are until it hurts to use them. But when you are young you do recover quickly. I was home about a week after the operation and doing most of the activates I had done before. I still had the staples in my stomach and was able to chase my younger brother 4 blocks after he decided to start a fight with me. Brotherly love. Anyway your son should have no problem going back to school in Dec, maybe even sooner.

[DennyD]

I think this decision is pretty tough to begin with. Did Kantoff get back to you? There is a decent shot the surgery could potentially be curative. Just keep in mind that Jason will be on a very tight leash as far as surveillance labs are concerned (bloodwork and chest X-rays every 2-3 months and CT scans every 6).

Either way, Jason's prospects of a cure are very high. When would he be having the RPLND?

I think the point that we really wanted to make is that the communication between Drs is vital.

The second point is yes, sometimes the RPLND alone can be curative. Sometimes it is not needed. Sometimes Chemo alone is curative. Each treatment is warranted to each individual 's circumstances, but one of the best, most curative treatments is still the RPLND with Adjuvant chemo in cases that warrant it.

we are very glad that your Urologist and you reached out to the expert in the treatment of this disease. It is amazing that he will always be available to help those in need. He always has, and always will.

We hope that you feel some relief, as the future is very bright for your son. As our experience with your Urologist left us with a great impression, he only made a bigger impression with his commitment to making sure. That is a sign of a great Dr

Denny and Nancy

[Margaret]

At first I was really put off by the idea of my son having rplnd, after reading about it.
Then after spending months being exposed to so many guys that have had it, I calmed down about it a bit and felt better about him having it.

Then later I welcomed it, actually couldnt wait for them to get to it, and felt better knowing that they were actually looking inside his body, and physically removing anything and everything that may be cancer, and testing nearby nodes to see if there was any spread that hadnt shown up on scans.
But then in Anthonys case, the cancer had returned after chemo, so I was very anxious for them to get to the surgery.

We received a copy of a letter from the oncologist at U of M, stating that he still feels Anthony should have more chemo since he had his rplnd. We won't do it.
Dr. Einhorn says that sometimes the surgery can cure post chemo residual disease, but another relapse should be treated with HDC, which has a higher success rate as second line chemo. It has been since June 8 that he had the surgery, and so far everything is clean.

None of these treatments are desirable by a long shot, but unfortunately there is no other choice.
I certainly do know the gut wrenching feelings you are experiencing. Just know that all of us understand, and we're here for you. ( I know you know that)

It feels good to have direction after going through so many changes and uncertainty about what is right. I hope that you will rest feeling confidant about the decision that has been made.

Prayers-
Tammy

Tammy I had been thinking of you and wondering if Anthony's AFP has lowered again? I know I have not asked in a while and I was not sure if it was in normal range? You have done so great with him...Super MOM

[mstlyn]

Hi Margaret,

Thanks for asking about Anthonys markers. We've had one heck of a time with the new labs.
The last marker results that I know about were from the first week in September, which was still in the 7 range.

I took him to have the markers checked again on Sept 13 and again around 2 weeks later. I kept calling the doctors office for the sept 13 th results and they kept telling me they werent back. After 3 weeks and yet another marker check, the results were still not back.

I told the nurse they needed to find out what was going on at the lab- finally I got a call from the doctors office only to find out that for those 2 marker checks, they didnt even check his AFP, only the HCG.
Needless to say I was furious, and when I took him for the latest one which was oct 4th, they were apologetic about it, and made sure they had his orders open so they tested everything they were supposed to.

Now I still don't have his oct 4th results. I called them 2 days ago and left a message asking them to call me with the results, or get in touch with the lab if they didnt have it. No one bothered to call us back .. I called and left yet another message today, and have not heard a word from them.

We just changed doctors again. Went back to hurley physicians instead of Mclaren .. we were better off where we were in the first place.

So we dont have any marker results for 5 weeks now, but the last few were in the 7.4, 7.3, 7.1 area.


Sorry this is so long

I have wanted to vent about this several times and decided I didnt feel like typing all of it. You made me do it!!

How are things with you and Boyce????

Hugsssss