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Posted

Ever since I was dx'd, I've tried to concentrate on the lessons I need to learn in this process. One is to be more forthcoming with the physicians who are treating me. I'm going to paste my post to Dr West this morning to solidify my intent:

To Dr West: Well, my attempts to try to rationalize not going on Avastin maintenance seem to fail me every time. Yesterday I called and made an appointment at my PCP'office and my regular doctor was in. He's in and out of town and has new docs covering his practice now. I've seen one of them a few times and like him but he's not my regular doctor. My bp was 200-something over 118. I asked him to keep me from stroking out until I went to MDACC on Tuesday so I could talk to my onc about not doing the Avastin maintenance. He looked right at me and said "I'll take care of your bp and you stay on the treatment." He said I look good and am holding my weight so it's doing something. I don't know if I'm sure what's doing what but I trust him. If Dr T backs him up, oh well, I'm with them. The new bp routine is Micardis 80mg, Metoprolol 100mg and Amlodipine 5 mg twice a day. It's working so far to bring it down but the real test will be 8 to 10 days after the next infusion. If it doesn't, he reminded me to call him on his personal cell like he told me to do before. I'm not doing a very good job on the lesson I need to learn about not wanting to bother people. Dr T's PA already admonished me for not reporting side effects to them. She said MDACC is very aggressive in treating side effects.

Dr West, you've been "it" because of the distance the internet offers that makes it easier for me to reach out. But be assured I'm working on that problem and hopefully will start letting my PCP and Onc in on what's going on with me.

Judy in Key West

Posted

You keep working on that being forthcoming thing, Judy. You gotta keep your 'eyes on the prize', and if that means reporting 'stuff' then DO IT, girl! This is no time to be timid or to worry that someone may think you're a bother. NO WAY! Your bp needs to be taken care of and it seems your guy is planning to do just that. Now check with MDACC and get them up to speed before you make any final decision.

Sorry.......don't mean to dictate. I know sometimes I respond better to a swift kick than a hug. I'm sending many hugs too, Judy. Do what you feel is the right thing to do! And remember that you are cared about!

Kasey

Posted

thanks Judy. It is comforting to know there are others out there like me. Prior to being diagnosed I rarely went to a doctor. Now, I need to go lots and act on everything. It is hard to change old habits. But you are right, there are many lessons learned and this is just one of them. Best wishes to you with your continued resolve.

Posted

Judy -

I, too, was one who never went to the doctor. Guess thats why I was Stage IV on diagnosis!! Talk about a lesson to be learned, huh??? But things are different now, and I no longer see myself as a whiner or complainer. I grew up in a house where my father didn't believe in docs and that if you were "strong" you would get better on your own.

I, too, had horrible high pressure with Avastin maintainence. It took them a while, but they did get it under control. And I have to tell you, it was because I kept calling and complaining. They were so convinced the blinding headaches were from my sinuses and I knew better. So if I hadn't have been proactive, who knows what would have happened.

I know you've had a tough time with your chemo and the long trips to the cancer center and back. I feel so sorry for what you have had to go through. You just hang in there, girl, and remember that you have a family that loves you dearly and your extended "family" here that is always willing to help you and be by your side.

Hugs - Patti B.

Posted

This is no time to be timid or to worry that someone may think you're a bother....sometimes I respond better to a swift kick than a hug.

Kasey

Kasey:

Not sure if I'm doing this correctly but am trying to take a page out of Barbara's book and respond to each of you kind women individually. I had to laugh at the thought of me being timid. I can mix it up with the best of them--my PCP on occasion included. The not wanting to bother people though, you hit that one right on. And yes, sometimes I do respond better to a swift kick so thanks for that and the hug. Notice I didn't say anything about arguing with my doc this time though. My daughter laughed when I told her what he said and noted that my family can all tell me what I should do but this time Dr G tells me and that's it. He knows me long enough I guess to also know when I need a swift kick. I think underneath all this is that fantasy that I'm all better now and don't need the maintenance!

Thanks for caring, Judy in Key West

PS I'm not forgetting that your wait for your follow-up is coming soon--somewhere on or around April 9?

Posted
"Patti B"]Judy -

I, too, was one who never went to the doctor. Guess thats why I was Stage IV on diagnosis!! I grew up in a house where my father didn't believe in docs and that if you were "strong" you would get better on your own....I, too, had horrible high pressure with Avastin maintainence. It took them a while, but they did get it under control.

Patti:

Ditto on that household where you didn't go to the doctor. It's a wonder to me any of us in a particular generation or family situation came out alive! I'm always glad (not for you but for me) to hear someone else who had this issue with Avastin. Not a lot of people seem to have. I have really bad allergy/sinus issues but can tell the difference. My biggest problem is my bp hasn't stayed down long enough for me to find out yet if there are Avastin headaches separate from the bp issue. I hope not. My pressure is coming down slowly after yesterday's change in meds but I still have a killer headache. I call it "head pain" as opposed to a sinus "headache." Thanks for your kind words and support. I really do appreciate this extended family and the love it extends to all of us who struggle with this demon cancer.

Judy in Key West

Posted
"SandraL"]thanks Judy. It is comforting to know there are others out there like me. Prior to being diagnosed I rarely went to a doctor. Now, I need to go lots and act on everything. It is hard to change old habits. But you are right, there are many lessons learned and this is just one of them. Best wishes to you with your continued resolve.

Sandra:

Oops, I went looking for you at the end and you were the first response. Sorry about that. Yes, it is hard to change old habits. I remember going to the doctor twice in a couple of months after my annual checkup. I had started six years or so to do them religiously. Guess I thought along with eating better and exercising, they would keep me healthy. Anyway, after my second visit I remarked to me doc that he wasn't used to seeing me between annual checkups. He sure does see me now, and his associates too when he's not available. I am all about lessons and I've identified more than one in this experience.

Thanks for your kind words and good wishes. They are much appreciated.

Judy in Key West

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