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Getting a second opionion by phone?

connsteele
Posts: 232
Joined: May 2011

Has anyone ever gotten a second opinion over the phone? Our son's NO is putting him on Avastin. He gets the first infusion tomorrow. However, I am concerned that no other chemo drug is being added. We were told that more or less, this Avastin is the drug of last resort, and median survival is 6 months. (His MRI last week showed dramatic progression..almost a doubling in the sizes of the tumors over the past two months.) This decision came from the Tumor Board's recommendation, which involved input from a multi disciplinary team. He doesn't qualify for any clinical trials, mainly because his Karposky score is so low: 50.
But it seems to me they have given up on him. I know his prognosis is poor, we've known that since his surgery last April. I subscribe to a brain tumor caregivers list serve and someone posted that her husband was put on both Avastin and Irinotecan and had a positive response. Added another 1 1/2 years, most of it quality and reversal of some of his deficits. Of course, I suppose it could have been due to the Avastin. I guess who can say for sure?

I have a phone call into his NO, saying that we want to attack this more agressively by adding another drug. If he says no, then I want to get another opinion but we are not in a position to travel at this point.

Two questions:

Has anyone ever gotten a second opinion over the phone by mailing or faxing the patient's records? If so, was it difficult? How did it work out?

Thanks much,
Connie
m/o of David, age 34, dx AA3 on 4-13-11, has progressed to AA4

Beckymarie
Posts: 358
Joined: Aug 2009

Yes, when my husband was diagnosed with GBMIV, we got a 3rd opinion from a well-known neurosurgeon on the west coast. We forwarded my husband's MRI's and records to this doctor who reviewed them and called us with his opinion. Unfortunately, the third opinion came back the same as the first and second. It is not difficult to get a second opinion this way and I don't think all that uncommon.

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

I say go for it. We currently live in HI and my husband's NO is in Houston, TX. He does his MRIs here but only goes to TX for every other one, and then we mail them to TX on disc to be reviewed by the NO.

Keeping your son in our thoughts. Best of luck to a speedy 2nd opinion.

Raani01
Posts: 68
Joined: Mar 2011

Connie,
I am thinking about the same approach in second opinion for Jacob also. Because our NO won't give us enough time to traval to other facilities (he want us tomake decision in one week).I haven't got a chance yet as we have been contacting the radiation oncologist, neuro oncologist at the local hospitals etc.etc.

For Avastin, Jacob also got just Avastin and I wondered and asked our NO at that time why not adding any chemo.His response was there is no proven benefit for people for whom other chemos failed and it only cause the patient get the side effects from the chemo and also make the platellet goes low. Well, one thing without any chemo for Jacob was that he was feeling better on avastin. I won't worry too much because my understanding is that avastin and chemo attack the tumor from different angles; avastin block the blood suppply to the tumor cell making it starving and chemo try to kill the tumor cell that are growing. In my husband's and your son's case, the NOs are interested in the effects from avastin because they don't believe chemo will do any good.
I would still recommend a second opinion, if possible.Even after the first infusion , i believe they can add chemo in the coming infusions( it is every other week.right!).

Don't give up,
Raani

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Connie:

UCSF Neuro-oncology has been very helpful to me over the phone. They will do a case study, where they present your son's case to their tumor board and tell you what they think. I believe the pediatric one is no charge at this time, but there is a fee on the adult side. Maybe the insurance company will cover this? I believe do WHATEVER you have to do to advocate for you son. God Bless you.

Edna

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