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"OCF Canuck"
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

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I would look at the dr. Brian had mentioned who might be able to do the carotid surgery. I think that is likely - depending on your mother's health - the best option. Hugs my dear you are a terrific daughter.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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So I need you to IM to me the patient name, the doctor that you were dealing with at MDACC and the dates on which all this took place. I need to understand this ASAP, because I have a call into the department head there and I want to understand how this went from one thing, to something completely different, and all this time transpired in between. I need to know that they did this and this is not something that you misunderstood their intentions.

I will understand this better after the call to him and let you know the inside story. In the meantime, now that this is not an option at MDACC, I want to talk to you off line about all the Hail Mary ideas, and also what you thunk your mother really wants, what the family wants which is maybe something different, and what is actually best for her. These are all really tough calls now, and they are all scary. There is also the possibility that nothing can be done, and everyone should be prepared for that possibility mentally. But I will help you sort through the facts and the realities and the possibilities until you fully understand it. I am surprised that MDACC was into doing one thing and then they did a 180. That makes no sense to me and is not the way they operate as a rule. So something isn't right here and we need to understand that.

But I promise by tomorrow morning I will have ideas on what happened if you get me what I have asked for, options for you, if you spend 15 minutes with me on the phone w me and get me the info that I need prior to me talking to MDACC.

By the by, there is no such thing as an "MDACC certified" doctor. Many doctors go there to do their residency right after school, and because of the weight the name MDACC carries, they like to tell people that they trained there. That was for a year or two depending on the program, and it could have been more than a decade ago�.

Last edited by Brian Hill; 01-13-2015 01:46 PM.

Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Joined: Oct 2013
Posts: 23
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Posts: 23
I'm having my Father go through a clinical trial there at MDA. I have been talking to the clinical trial nurse and she is doing the best she can to get him started. Mind you we are in Georgia and will be traveling to Houston. Keep calling the medical oncologist office, don't give up until they tell you what is going on. I will send you a private message.


Caregiver along with my mother to my Father
SCC 12/2012 age 63
25 rad end 2/2013
10 rad end 7/2013
9/19 recur. Stage IV
not a candidate for surgery
more chemo 10/2013
Clear PET 01/2014
cancer back on PET 04/2014
not operable MET to nose
at a NCCN
35 Rad start 06/23/14
Chemo every week during Rad for 7 weeks
Joined: Apr 2014
Posts: 236
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Joined: Apr 2014
Posts: 236
Brian

I sent you a Pm message explaining everything from day one at MDA. Please let me know if you get it.

Connie
I will send you a message

Last edited by sweetpe1; 01-13-2015 10:27 PM.

Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Mar 2002
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OCF Founder
Patient Advocate (old timer, 2000 posts)
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Joined: Mar 2002
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Likes: 52
Have call into MDACC with no reply yet. You need to get into Tulane or somewhere and get restarted asap. So this contact at MDACC is to find out what went off the rails, or what miscommunication took place, to figure out IF and why they changed their minds, and why if that is the case it was handled so poorly. It may take a couple days to break through. So don't do anything please. Keep working on local possibilities. I will reach out to you by PM as soon as I know what's what with MDACC.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Joined: Apr 2014
Posts: 236
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Posts: 236
Thanks Brian

I had a busy day today. I have a new Oncologist who will have a meeting with us tomorrow on Friday at 1:30 pm.

After sending message after message to MDA I started to get return calls. The oncologist at MDA said she would order a standard chemo treatment for my mother. Carbo/Docetaxel.
We accepted the treatments. We were asked if my mother wanted to take the treatments in Louisiana which sounds better to me because I don't think my mother can handle the travel again at this time.

So this new doctor will communicate with MDA on the treatments. Hopefully things will start looking up and after treatment my moms pain and swelling may go down some.

Thank you Brian for being so caring. Your help is very much appreciated .

Heidi


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


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