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Search took 0.01 seconds. Search: Posts Made By: evlin75
Forum: her2group 05-07-2015, 07:46 PM
Replies: 60
Views: 13,860
Posted By evlin75
Re: Cancer in Spinal Fluid - given 6 months

I wish you well. I talked to this doctor on the phone but for some reason she was not willing to take on Susan's care. It might have made the difference in Susan's longevity if Mona had been willing...
Forum: her2group 02-02-2015, 01:25 PM
Replies: 12
Views: 2,318
Posted By evlin75
Re: My wifes fight- long

So sorry for your great loss. It sounds like you had a lot of quality fun times even after your wife's diagnoses and treatments. That is good and I expect wonderful memories remain.
As it is posted...
Forum: her2group 01-29-2015, 08:11 AM
Replies: 27
Views: 4,528
Posted By evlin75
Re: My daughter, Susan.

Thank you. Finding it before it became invasive ductal would have been the important time....right in the beginning in 2003.
I have racked my brain for any solutions that might have worked, but...
Forum: her2group 12-29-2014, 11:09 PM
Replies: 27
Views: 4,528
Posted By evlin75
Re: My daughter, Susan.

http://www.degusipefuneralhome.com/obituaries/Susan-Kristoff/#!/Obituary

My daughter's obituary.


Ev
Forum: her2group 12-20-2014, 01:13 PM
Replies: 27
Views: 4,528
Posted By evlin75
My daughter, Susan.

Passed Thursday the 18th of December. Diagnosed as invasive ductal her 2+++ in April 2003. Possibly been there 10 years and undiagnosed despite yearly mamograms.
Herceptin was just in clinical...
Forum: her2group 11-23-2014, 12:00 PM
Replies: 6
Views: 2,386
Posted By evlin75
Re: www.littlepink.org

I applied two years in a row for my daughter. They did not respond in any way. Now not even possible for her. Guess you have to be special - or know someone in the organization.

ev
Forum: her2group 10-29-2014, 07:02 AM
Replies: 7
Views: 2,172
Posted By evlin75
Re: rolepaul I know this is not for the here and now

Rolepaul,
How often and at what mg is Nina now getting the treatments to the ommaya? My daughter Susan is getting just the Herceptin 80 mg per ommaya every week, without any other medication added....
Forum: her2group 08-29-2014, 05:14 PM
Replies: 235
Views: 209,589
Posted By evlin75
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Paul,

Best wishes to you and Nina. Susan is still doing the ommaya Herceptin every week. Just finished cyber knife to an enlarged subclavicle lymph node.

Her genome results indicate...
Forum: her2group 08-27-2014, 03:50 PM
Replies: 2
Views: 2,406
Posted By evlin75
Re: potential of afatinib in treatment of her2+ bc--- for those running out of option

My daughter, Susan, is possibly starting this drug - if the insurance company gives approval. Has anyone here had any experience with it? (Such as side effects and tolerance)
Thanks much, for any...
Forum: her2group 08-13-2014, 08:19 PM
Replies: 27
Views: 6,011
Posted By evlin75
Re: news from ASCO-- some joyous, some a downer--may set things back a bit

it is a constant struggle to get new medications so the cancer patient can keep going. I d not think the expense is wasted as these patients are in LIFE"S clinical trials, as they try new medications...
Forum: her2group 06-20-2014, 03:00 PM
Replies: 1
Views: 1,457
Posted By evlin75
Diethylstibestral-how many know or suspect its involvement

I am wondering how many here know their mother received DES or suspect that she might have during her pregnancy?
Daughter has mutations that are suspect and I did receive treatment during pregnancy...
Forum: her2group 06-14-2014, 02:21 AM
Replies: 1
Views: 1,397
Posted By evlin75
Potassium loss caused by carbo/gemzar?

Wondering if nausea and vomiting after first treatment of carboplatin/gemzar are being caused by potassium loss. Any one have experience with this side effect?

Ev
Forum: her2group 06-07-2014, 10:12 AM
Replies: 6
Views: 1,718
Posted By evlin75
Re: Neratinib clinical trials

Thanks Jackie,
All information is welcome. Seems to be a tough drug but many of them are tough.
As an RN my inclination is to do as much research on my own that is possible. Research helps...
Forum: her2group 06-06-2014, 07:43 PM
Replies: 6
Views: 1,718
Posted By evlin75
Neratinib clinical trials

Daughter's biopsy indicates neratinib might work for her. Anyone doing a trial? The one her onc recommended is in St Louis. Wondering if she could find one closer to her home in Florida. Thanks for...
Forum: her2group 04-30-2014, 06:12 AM
Replies: 5
Views: 1,454
Posted By evlin75
Re: Cyberkife or proton therapy on a lymph node?

Thanks Cathy,
The latest decision now seems to be to do cryosurgery. Maybe because of the previous failed radiation. I am not totally sure but I understand the freezing type removal can be repeated...
Forum: her2group 04-29-2014, 02:22 PM
Replies: 5
Views: 1,454
Posted By evlin75
Re: Cyberkife or proton therapy on a lymph node?

Thanks Jackie,

I will give Susan this info. It seems the nodes are common and not easy to shrink and stay removed.
She would have to travel and stay to receive the proton so it would have to...
Forum: her2group 04-28-2014, 08:41 PM
Replies: 5
Views: 1,454
Posted By evlin75
Cyberkife or proton therapy on a lymph node?

Would like any opinions or experience regarding treatment to a supra-clavicle lymph node. It has gone down in size some since the treatments with Abraxine but is still present. The plan is to do the...
Forum: her2group 04-12-2014, 09:05 AM
Replies: 56
Views: 7,131
Posted By evlin75
Re: It's Not Working! Three Weeks Of Nothing But Side Effects!

Karen, Also I would recommend getting a biopsy to determine if the status of the cancer has changed. My daughter is thinking of getting a biopsy of her lymph node to ascertain if the hormone status...
Forum: her2group 04-12-2014, 08:12 AM
Replies: 56
Views: 7,131
Posted By evlin75
Re: It's Not Working! Three Weeks Of Nothing But Side Effects!

Sorry Karen that this is not working for you. My daughter who is also highly her2 and slightly hormone positive as you are, was looking to this new treatment as a possible next step if she would...
Forum: her2group 03-23-2014, 08:17 PM
Replies: 2
Views: 1,247
Posted By evlin75
Safe zometa interval for bone metastases

What is the recommended schedule now for bone building agents that work effectively without unwanted side effects. (Such as gum problems - or too hard bone outside but soft inside that would...
Forum: her2group 03-13-2014, 08:25 AM
Replies: 4
Views: 1,295
Posted By evlin75
Re: Abraxine -anyone with good results?

Hi Marie,
I tried to reply but my message disappeared. I will try again.
Susan first had bone mets to her hip. Later to her cerebellum. Had surgical removal of a tennis ball sized growth followed...
Forum: her2group 03-12-2014, 09:48 PM
Replies: 4
Views: 1,295
Posted By evlin75
Abraxine -anyone with good results?

Susan has been on weekly treatments since December 2013. If anyone here has had good results, how many treatments were needed? Her markers are coming down and she is scheduled for a PET soon, but...
Forum: her2group 02-21-2014, 11:05 AM
Replies: 15
Views: 2,708
Posted By evlin75
Re: Surgery for our member "Dchips" on the 29th

Thinking of you daily Darita. So hoping the surgery went well and you are just busy recovering. Let us know how things are going when you feel up to it.

Ev
Forum: her2group 01-25-2014, 09:20 AM
Replies: 235
Views: 209,589
Posted By evlin75
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

I will be thinking of you on the 29th and am hoping you have great success with the surgery. Will be looking forward to your update.
My very best wishes !

Ev
Forum: her2group 01-24-2014, 01:03 AM
Replies: 235
Views: 209,589
Posted By evlin75
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

So glad to hear that Carol is still doing well and gaining strength.
Susan is still getting IT Herceptin 80 weekly. She is now on Abraxine also weekly IV for the enlarged clavicle lymph nodes. ...
Showing results 1 to 25 of 118
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