Rosevalley - this is for you!

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited June 2016

    I love the photos of the Puffins.. they look like toys. Did you take that photo? Do you have Puffins just hanging out on the beach? How lucky if you do.

    Well I called the office and got a call back. They basically said it was "my fault" for using their email system and not calling. ??? Really your NP emails me that the results are positive and does nothing, no call, no order for antibiotics and it's the patients fault? What responsibility does the NP have? The patient has to follow up and hunt you down and ask for an order for a positive UTI? WTH??? Nice try but if the results came to your office and you drop the ball it's your fault. What if my retarded autistic deaf kid had a UTI and could never call and ask for a script since she doesn't talk and wouldn't know what to ask for anyway... no intervention because she didn't call the office and ask? I am disgusted. I can not believe their excuse for doing nothing was that the exchange went through email. My MO is out of the office on vacation and so is my PCP I am screwed. At least I finally got Cipro ordered.

    It's a beautiful day sunny and WARM!!! Yay... heat. I know the country is baking but in our wee little corner here in the Pacific Northwest we are usually cool and cloudy.. a little sun and warmth would be very welcome. Everyone have a wonderful day. :-)

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  • Kandy
    Kandy Member Posts: 1,461
    edited June 2016

    That office needs a rude awakening. It is not your fault. They are responsible for any positive results. They are just trying to cover up their mistake. If that was a critical finding, they could actually be sued. Unbelievable that they told you that. I think I would look for another Dr. Sure hope the Cipro works well. Best wishes to you.

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited June 2016

    I can't believe it. My brother just told me a good friend I went to college with just came down with cancer. He has 4 gorgeous kids and was always hard working and fun loving. Known them for 37 years. Cancer just sucks. He told my brother he cried when I was diagnosed at 48 and here he gets diagnosed late 50s. Sigh.. right before retirement. My uncle died of a MI right at 65 and my Dad never got a days retirement having his health tank. Life is fragile. Best to enjoy a little life and blessings every day. Never take anything for granted.

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  • susan3
    susan3 Member Posts: 3,728
    edited June 2016

    You got that right Rosie.

    I know you don't want to hear this...but...our good friend is an internist. You gotta line yourself up with the right people. He even gives my hubby flu shots in the parking lot of my hubby's work. So I am fortunate, I never have to wait for anything. I have peeps. but might end up in jail with parking lot shots. Will anyone visit

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  • susan3
    susan3 Member Posts: 3,728
    edited June 2016

    imageThese are my green beans Rosie.. Can you believe it. They have never looked so good

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  • susan3
    susan3 Member Posts: 3,728
    edited June 2016

    imagegreat garden this year

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  • susan3
    susan3 Member Posts: 3,728
    edited June 2016

    imageradishes, beets, peppers, tomatoes....and cuc

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  • lalady1
    lalady1 Member Posts: 618
    edited June 2016
    image
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  • feelingfeline
    feelingfeline Member Posts: 5,664
    edited June 2016

    Rose so sorry to hear the news of the dx of your friend.There is no way we can understand these things. "Blessed are those who mourn, for they will be comforted" I always took that in the broad sense including all those who are having a rough time. A tonne of extra credit in heaven for a rough ride here. That is what I hope is going on for all who are suffering illness bereavemment etc. A friend here died from cancer last Tue only 44. HUGS. XXX

    Yes puffins are real. Went on a bird-watching trip last weekend.

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  • feelingfeline
    feelingfeline Member Posts: 5,664
    edited June 2016

    image

    image

    image

    (These are the sweetest birds, but I am glad I don't have to eat what they do - sand eels!)

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  • susan3
    susan3 Member Posts: 3,728
    edited June 2016

    wow..how cool to actually see them...jealous

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited June 2016

    I would think it would be great fun to watch Puffins. They are so beautiful. Susan your garden is gorgeous. I am jealous we can't grow beans that big and bushy. Not enough heat... it's only going to be 70 today. Taxol infusion number 2 at 3pm. yay

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited June 2016

    Good morning friends- such beautiful photos of the roses for our dear Rosevalley. I don't have any rose photos to post, but here are some trumpet vines from my client site I took yesterday.

    image

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited June 2016

    image

    May you be like this poppy today, dear Rosevalley - a bit tattered and frayed at your edges, but star-radiant at center.

    Fingers crossed for your new treatment - may you be granted your deepest dreams!

    Love you always, Stephanie

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited June 2016

    Not roses, but my peonies are in bloom. image

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited June 2016

    These are the 1st roses I have ever planted. Just wanted to share them with you...image

    image

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited June 2016

    Your first roses are coming right along! our peonies bloomed months ago! Beautiful. I went for my taxol and wasn't in to the infusion for all of 23cc... turned bright red, flushed and weird heart rate and couldn't breathe. Not pleasant but I recovered super quick. I tolerated the first dose fine and the dose dense doses in 07. I turned red and flushed with Doxil but they slowed it down and finished the infusion. This time they started so late 3:30 by the time labs were run and the drug got there. We got there at 1pm.. so they stopped the infusion and I guess threw it out.. So we used a sick day for nothing. I have to go in for another go on Friday... poop. I feel ok, sleepy from the benadryl and the steroids haven't hit yet. .I hate using sick time for nothing and now that's 4 days off the schedule. sigh. Everything works for cancer's benefit. Oh well whatcha gonna do? Crap happens.

    Sounds like folks had a good day. We saw my DD2 and had lunch so that was fun and inspired me. I love visiting my kids. Hope I can tolerate the taxol wonder what's next if i can't?

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  • Hummingbird4
    Hummingbird4 Member Posts: 331
    edited June 2016

    Rosevalley, crap that really stinks!! Sorry to hear what went on with today's infusion. On Friday - will they slow down the infusion? On the peritoneal carcinomatosis thread, one gal recently had a similar incident from what I remember reading, and they are desensitizing over a much longer infusion time. Wishing things go well for you on Friday. Gee - it sure isn't ever easy for you!

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  • susan3
    susan3 Member Posts: 3,728
    edited June 2016

    my taxol was a slow infusion and the nurse didn't leave the room. Maybe more pre Meds?? Thatswhat they had to do for me to be on it. Good luck rosie

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited June 2016

    Dear Rosevalley- Sending you hugs and hoping the taxol will help you to feel better and have continued time at home with family this summer. I enjoyed hearing you had a nice lunch with DD2. These are the moments that are special.

    Don't worry about tomorrow friend, just embrace the lovely day and the new memories created with family!

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited June 2016

    This is a pretty big infusion room with lots of nurses right there, so there is help instantly. The nurses are really good and do it all. I like that they act like a team. They back each other up and no attitude. it seems like a nice atmosphere to work. It was just alarming the sensation of not being able to breathe. The flushing isn't awful. I guess next time they start it super slow and more benadryl or give it an hour before? Shoot I don't know what might work. We might just have to try a few things and see what works. Hummingbird and some of the others have had such good luck with Taxol and tolerated it, that it seems to be worth the potential reaction to try again. I will keep you posted. The only beef I have is with that NP... staying clear there.

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  • queenmomcat
    queenmomcat Member Posts: 3,039
    edited June 2016

    Your peonies are long gone? Oh. Right. Portland. Where violas and pansies are considered late-winter flowers. Harrumph. I say, Harrumph, madam.

    But I too am hoping that the chemo gives you, and therefore your daugher, that little bit of extra time. Desperately hoping that.

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited June 2016

    Take heart queenmomcat you have more sunny days then we have. All my pansies and violas made it through winter intact...I even have some coming up volunteered in the side walk cracks. Lots of annuals made it through our mild winter to bloom their heart out. It just doesn't warm up or hasn't yet. Last summer was the warmest it's been here in 16 years. My Mom is from Michigan and my Grandmother lived in Bay City. I spent many a summer as a kid enjoying the cabin on the river and loved the flowers and sunshine. I come from good Swedish stock..

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  • JFL
    JFL Member Posts: 1,947
    edited June 2016

    Rosevalley, your not being able to breathe experience on Taxol is scary! I am glad the nurse were about to get things under control so you could continue. I am hoping these chemos hold off your mets. It sounds like you have a good plan to slow down the Taxol drip and increase the Benadryl. The nurses can also increase the steroid premeds which helps. Taxol is known for that type of reaction. If you have the issue again and it is not manageable, Taxotere generally doesn't cause that response. Not sure if that is an option for you. When I tried dose dense Taxol in 2006, I went into anaphylaxis within minutes and had to switch to Taxotere. The chemo nurse told me that some people are allergic to the binding agent in Taxol called Cremaphor. Interesting that you didn't have issues with dose dense Taxol in the past . . . allergies definitely come and go over time.

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  • Loveroflife
    Loveroflife Member Posts: 5,563
    edited June 2016

    I wonder if Cipro plays a role in the reaction you had. It is a cyp3a4 inhibitor and Taxol is metabolized by cyp3a4. But then you only had 2-3 doses of Cipro when you received the Taxol today. ??? Besides the Benadryl and the steroid, did you receive an H2 blocker also?

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  • Kandy
    Kandy Member Posts: 1,461
    edited June 2016

    Rosevalley, that really stinks that you reacted to Taxol. Such a scary feeling. I had the same thing to happen in '09 with Taxotere and Taxol. They decided not to give me either of them then. I will be interested to see what happens on Friday. This has always concerned me that I was allergic to the Taxols. I hope they can figure something out so you can tolerate it. Best wishes.

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  • feelingfeline
    feelingfeline Member Posts: 5,664
    edited June 2016

    Best wishes for Friday. XXX

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  • susan3
    susan3 Member Posts: 3,728
    edited June 2016

    Rosie, our treatment area has changed. We all have private rooms now. I make them keep my door open. I often just go myself, and I want anyone walking by to see I m still upright sitting there. They have to do some different pre meds so I can drive home, that's why ours stay by your side. Something goes wrong and that door is closed.....big problem.

    Good luck Friday. In your pocket :)

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited June 2016

    Damn, Rosevalley,

    I want you to catch a break with the cancer and treatment already. Yeah, yeah, I know about the surprise months on Faslodex that brought you out of the December to February N&V slump...but you are due for another surprise with the Taxol. A good response, not the one you got.

    Your oncology team sounds on the ball - able to not poison you with chemo and to even make it bearable. Am putting trust and them and thinking you still have a few more lives left of your nine.

    sending loving, healing light, Stephanie


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  • ruthbru
    ruthbru Member Posts: 57,235
    edited June 2016

    Since you are a flower lover, I wanted to share this with you. Last summer I was visiting a friend, and she brought me to these gardens. Many years before there was a very rich couple by the name of Clemens who lived in her town, and who loved to garden. After the wife was diagnosed with multiple sclerosis and confined to a wheelchair, her husband bought the land across the street from their house, land which overlooks the river, and made it into a very large and very beautiful garden for his wife. They could wheel over and enjoy the flowers or look at them out of the front window. After her death, her husband gave the gardens to the city as a memorial to his wife, and for the perpetual enjoyment of all.

    image

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