Fuming

[dadmo]

Tammy:
Make sure you bring a pencil and paper. Even when the doctor speaks slow enough for a geico caveman it will be hard to take it all in.

[dadmo]

Tammy:
Just a little reassurance post here. My son was stage III with enlarged lymph nodes and lung mets. 4xEP and the beast was gone.

[jennys]

Hi Tammy,
I'm new to this post and felt i needed to let you know that I truly feel for you...I too was feeling very frustrated a few days ago with how my brother's treatment was being handled....I had felt it all along but my brother was happy with his onc so who was I to say differently.

My brother has choriocarcinoma stage 3; mestastic areas are: abdomen; liver; lungs;....he has had 4xBEP....then he got pulmory toxicity from the bleomycin....so even though his cancer is gone in his lungs.....his lungs are shot because of the fibrosis, he now needs to take steroids (which has it's own side affects)....we have recently found out that the cancer is back....in 2 weeks his hcg levels have gone from 3000 to 8300.....for the next 2 weeks he has gone through his onc saying that he can't treat him anymore ( wouldn't give an explanation) said he would organise a referral to Sir Charles Gairdener Hospital at that someone from there would be in touch.....my brother waited a week then called his old onc to find out what was happening....guess what? the onc was on holidays and wouldn't be back for another week, and, no, the receptionist couldn't interrupt him on his holiday!!!! so he called SCGH and they explained that there was nothing they could do until they received a referral from his onc!!! He then rang the cancer council to see what he could do and they told him he had every right to demand the secretary of the onc get in touch with him......which she did, only to find out that the referral was still on her desk

Anyway he has finally seen the onc at SCGH today and is very happy with how practical and informative she was.

She has explained that he will undergo HDC for 5 days, then 3 weeks off, then back for the Stem Cell Therapy; this will probably happen within the next 2 weeks as she wants him to have a PET scan first to try to pinpoint exactly where the cancer is....(he had blood tests and a Chest ct today and will get the results of them tomorrow), so hopefully full steam ahead.....and we know it won't be pretty......yet his remarkable sense of humour and stamina helps the rest of us stay positive

Sorry this is long winded, I just felt a kindred spirit in your message
My thoughts are with you and your son....
Take care
Jenny

[Savin16]

Tammy I just wanted to let you know you have been on my mind all day. I hope things get better. I totally understand the finance part, my brother had no insurance in the beginning, and now his home is in foreclosure. He has no income at all. I would try to talk to your son's Dr. again. Or see if it's possible to call and speak with Dr. Einhorn or maybe you can fax all the information or mail it to him cat scans, blood work, everything and see if he can tell you that way. I don't know, I'm just trying to find a solution for you. Best of luck.

[Karen]

She said that Dr. Danish told her to let me know that Dr. Einhorn's protocol is across the board and that is what he is following.
We have an appointment to see Dr. Danish on the 25th so I guess we can go over any unanswered questions at that time.
Would this response sit well with the rest of you?

It's good that they got right back to you and are following Einhorn's protocol...BUT, I agree with dadmo on having Einhorn's group review the films and labs. My husband was stage 1 seminoma and we still hauled everything to Sloan, and would have done so regardless of his doc's opinion on a consult being needed. He sounds like he's on the right track with the chemo, but a second opinion on staging can't hurt. We paid out of pocket for the consult and the peace of mind was worth it. Good luck on the 25th!!!!

[dadmo]

He's certainly following the right protocal but see if you can get a second opinion as to the staging. It won't change anything right now but as your sons treatment progress they will compare the current slides to future slides. When we used Sloan as a second opinion they reviewed the films from our doctor then took their own and set up a date for Jason that was about a month after he finished chemo. At that point more films were taken and the need for an RPLND was established. It was just comforting to know that the RPLND facility was ready to receive our son if needed.

[kmom49]

consult

I totally understand Robert, but as a Mom you can never have enough reassurance

[kmom49]

consult

No, that would not set well with me. The doctor should be more than willing to grant your request! I'm sure if it were his/her son they would, but that's just my opinion. Best of luck and your son is in my prayers

Kathy

[mstlyn]

Tammy:
I just wish I could do more.

I wish I could too!

Short of being God or an expert that can treat this disease there is not much else that any human being can do.

You and Nancy really put yourselves way out there for people.
can I call you cyber angels? =)

Tammy

[mstlyn]

Vicki from Dr. Danish's office just called back after speaking with Dr. Danish about my request that he consult with Dr. Einhorn.

She said that Dr. Danish told her to let me know that Dr. Einhorn's protocol is across the board and that is what he is following.

We have an appointment to see Dr. Danish on the 25th so I guess we can go over any unanswered questions at that time.

Would this response sit well with the rest of you?

[dadmo]

Tammy:
I just wish I could do more.

[mstlyn]

Tammy:
I know the medical bills can be upsetting but you son will have a long life to clean that up. If you should go to Sloan don't worry about a place to stay. Nancy and I always have our home available.

I am not upset about the medical bills. I care less about the bills. I just care that someone will take care of my son regardless of lack of insurance and money.
Call a doctors office and they want to know if you have insurance. And the next thing is.. "we dont accept that insurance" or .. how will you be paying?

I have always been under the impression that if there is no money there is no treatment, or limited treatment.

How amazingly caring and generous of you both to offer your home to strangers in order to help them with these issues. I have no doubt there are great blessings in store for you. Thank you so much.
I will keep your offer in mind.

Tammy

[mstlyn]

mstlyn:
Don't drive yourself crazy with getting the staging exact. The big issues is did it spread and to where. Your son has some spread and the protocol for treatment is clear and the cure is almost certain.
As far as a second opinion goes, get one from an expert. I started the process with our oncologist by asking if he would mind a peer review of what he found. I told him that I trusted him but I was very scared and it would make me feel better. His word to me were "O you mean a second opinion", with that he gave me a referral to Slaon Kettering. I called them the next day and was at Dr. Motzers office about two days after that.

I hope that the oncologist will consult with an expert. I would be happy with that much.
If my son is completely cured thats all that matters, though I am angry that he may be undergoing more treatment then he should have had to, had someone got on this faster.

[dadmo]

Tammy:
I know the medical bills can be upsetting but you son will have a long life to clean that up. If you should go to Sloan don't worry about a place to stay. Nancy and I always have our home available.

[mstlyn]

I would suggest Indiana University since you are located in MI and they are one of the best. Dr. Einhorn's office can be reached at 317-274-0920

We had our oncologist reach out to him at the beginning and then when we wanted a second opinion we called directly and set up an appointment for a visit.

The entire staff there is great so even if you don't get in with Dr. Einhorn, they all concur on cases.

Thanks Lori. I called the oncologist and left them Dr. Einhorn's number. I am waiting to see what the oncologist has to say about my request.
If he will just show him all of my sons reports and follow his advice for treatment, I will be happy.