Rosevalley - this is for you!

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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited June 2016

    Rose....hearing that you're having taxol makes me hopeful you're feeling stronger & you're taking a break from hospice! Think of you always & love your loving pix!

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  • Hummingbird4
    Hummingbird4 Member Posts: 331
    edited June 2016

    Rosevalley, so glad to hear you got Taxol today and you did well with it. I'm keeping my fingers crossed for you to have a good success on it! I also got Taxol today - infusion #18. Same as you, I do have fatigue on chemo day but never feel sick and so I just sleep in the chemo suite and then I sleep a couple of hours more after I get home. I did that today and then I was fine. Tomorrow because of the steroids, you might actually have a lot of energy! Good Luck, I think of you often.

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  • mara51506
    mara51506 Member Posts: 5,088
    edited June 2016

    Dear Rosevalley. I am glad the Taxol was uneventful and I am praying for some relief for you as well. My best to you.

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

    Beautiful pictures. Praying!

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

    I love all the pictures! A walk in a rose garden virtual or real is always a treat. Thank you for the well wishes. Ronnie- I am off hospice or I couldn't get faslodex shots, Ibrance (I already had) or Taxol. The Taxol wasn't too bad.

    Hummingbird you too? After 18 infusions do you have anymore ascites? Do you drain anymore or did it all clear up? I came home after sleeping in the car and slept some more. I have no interest in eating. Got to ramp up the food intake or I will be in trouble. I will do more clear boosts as those sit lighter and don't make me burp as much. They gave me 500 in fluids and that helps. I am always thirsty it seems. My oncologist is very excited that this will lessen my symptoms. We will see. I hope it works for me like it has for you.

    Hugs to you all and thank you! I'll keep you posted as to whether I have more lives in my cat portfolio. It will be interesting to see.

    rosevalley

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

    image

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  • Hummingbird4
    Hummingbird4 Member Posts: 331
    edited June 2016

    Rosevalley, I do have malignant ascites but the Taxol brought it from moderate to "minimal residual"!!! I never had to drain. Most of my severe pain and swelling was due to the extensive tumor infiltration in my bowels which caused bowel. kinking. Taxol has reduced this and brought me relief. I do still have the same kidney swelling due to tumors pressing on my ureters that I had before Taxol, but so far have no symptoms from this. You said your MO is excited that Taxol will lessen your symptoms. My MO also - she is so thrilled with my last scan result. I will get scanned again in July. But it can take some time for Taxol to work. For me it took about a month until I noticed some lessening of symptoms and that was so difficult! But my MO kept telling me it was the only thing to do - wait and hope Taxol works. I did see two gastroenterologists because I was so desperate for relief, and basically they didn't have a good solution except to keep up with the chemo. Of course, I do worry but for now I'm very grateful for Taxol. I'm hoping and praying so much that it works for you too, Rosevalley, and sooner!!!

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

    image

    Here's another garden path, dear Rosevalley.

    I hope you feel embraced with healing energy today and that the Taxol benefits exceed your wildest dreams - giving you both quality and quantity of life.

    Hummingbird's experience offers great hope for this treatment.

    Your peritoneal sister and friend, Stephanie

    PS, Draining leads to increased thirstiness/dehydration. So many ways to lose fluids. Please keep drinking plenty of water and maybe nourishing herbal teas (lemon balm for happiness). We do what we can to maintain balance and release attachment to results. Loving kindness, S.

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

    Hoping you have a much better day today. Thoughts and prayers are with you.

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

    Well I just sent a message to my Onc's office. They gave me fluids yesterday which allowed me to pee a normal quantity and it's cloudy and stinky. Great yet another UTI no doubt. So my regular PCP just left for vacation and I hope my onc's office can fill in. Get on antibiotics and kick it back. I wonder if the N/V was from the UTI and not the Ibrance. I just got the tumor markers from my draw yesterday and they dropped to 840. WHich is great in just 2 weeks. I threw up 3 of the doses of the Ibrance. Couldn't keep them down. I felt much better after stopping the Ibrance. Hopefully the Taxol will work better on the bowel constriction like it did with Hummingbird's situation. I can drain the fluid off and get more comfortable that way but it's just temporary. My labs all looked fantastic. Except calcium which runs a tad low. It is hard to decide which drug or issue is causing which symptom. I don't understand why the ascites fluid has increased and yet the tumor markers dropped. Hmm puzzled. My poor body is weird. My hair is sooo thin.. I look pathetic. My oncologist doesn't think my hair will all fall out but it is coming out in handfulls. It was dropping out like crazy before the Taxol..

    My 8th graders graduation is tomorrow and at least I will have some hair for that. WooHoo. "Always look at the bright side of Life.. la la la la..." Monty Python!! Ha ha... gallows humor. I am warped. May you all have a great day. (((Hugs))) love rosevalley

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

    Rosevalley, I do hope you get something for the UTI soon. Those alone can be miserable much less the rest that you have going on. So delighted that your tumor markers have dropped. That is awesome. Hopefully Taxol will kick in soon and relieve some of your symptoms. I am thrilled that you feel well enough to attend the graduation. You will look gorgeous no matter what. Beauty is within. Thoughts and prayers with you always.

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

    Happy Graduation Day Rose. XXX

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

    image

    from my back garden to you.

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  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited June 2016

    Rosevalley wishing you the best of luck with weekly taxol. I've been on it for nearly 3 years now. The last 4 cycles have been as part of a trial for the oral form.

    I originally had multiple wide spread mets, lungs, bones, internal nodes, kidneys, thyroid, pleural effusion. The taxol worked pretty quickly reducing my load down to just a little bone action and has kept me stable all this time. My hair has grown back. I work 30 hours a week. I did have a few problems with SEs like fatigue in the beginning nothing to bad. Over time my body seems to have got used to its weekly dose and SEs are practically non existent.

    I'm praying for simalar results for you xx

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

    wow I am encouraged about your stories. To be on weekly taxol for 3 years and doing well. I didn't know there was an oral form. I slept the day they gave me the Taxol- no doubt from the benadryl but I couldn't sleep hardly at all yesterday and I have been up all night. I took ambien, melatonin, ativan and slept 12 until 2 am woke up and now it's 5:30 and I am wickedly tired and wired. I never flipped and flopped and tossed and turned so much in one night. I will be wasted tired at this graduation. When does the steroids wear off?? I need to go down and do the UA and get that taken care of. They never called me back to tell me if the order was faxed. Hopefully it's there. I have no feeling in my bladder so there is no pain. I wish I could sleep. ugh..

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

    So sorry you had a restless night. Definitely from the drugs. Hopefully they will be worn out by tonight and you can have a peaceful sleep. Praying that Taxol is the ticket.

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  • Mominator
    Mominator Member Posts: 1,575
    edited June 2016

    Happy Graduation Day Rosevalley and DD! I'm sending love and light your way. May today be a wonderful day for your family. 😍❤️😘💕

    I'm sending some more roses from my yarn garden:

    image

    I hope you feel rested, or at least better for graduation.

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

    Ohh I am tired! But I had all my girls here today and Daddy and a lovely graduation and visiting. Life is SWEET! I enjoyed it all. We enjoyed lunch with friends and dinner out with our family. It was sunny and breezy and a lovely day. Very very nice. My DD at college aced all her classes and my 8th grader did a fine respectable job. What more can a Mother ask for? It was fun.

    Now to watch "Alone" and find our what happens next and Sleep. The yarn garden is coming along! I hope you are all havinga good day. Lovingkindness to all. rosevalley

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

    Dear Rosevalley,

    I can feel the sweetness of your life radiating out from your family and you...how rose-like!

    Am radiating back sweetness and light for YOU!

    Here's a flower photo - again from my friend's garden on the wet side of our county ~

    image

    Clematis! Yes!

    much loving kindness, Stephanie



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

    So glad for the fun day with the family!

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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited June 2016

    Hi Miss Rosie Posey! I was thinking of you whilst taking this picture this morning! You want to come out, and we will walk up to Starbucks??

    image

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

    Hi chevy!! You have so much going on in your garden all those pretty plants! I love your vintage home too. We are still hoping it will warm up. I have a long sleeve shirt, jeans and a fleece vest and I am barely warm... our high is 65 degrees. BRRR... I would love to sit in your garden and enjoy starbucks with you.

    The office emailed me that my UA was positive but the NP didn't send in antibiotics. So here it is 5:30 pharmacy closes at 6pm. Why email a positive results and not order anything? What's the point? Sometimes I wonder what folks are thinking. Guess we wait until Monday doubt anything will be done on a Sunday.

    Happy Father's Day to everyone. May you have a warm sunny day!

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

    Rosevalley, that is crazy they didn't call anything in. An UTI is so uncomfortable. I sure hate you have to go through the weekend like that. Can't imagine it being that cool in June. I am a sun lover, the hotter the better. I hope you have a nice weekend. Sending hugs and prayers.

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited June 2016

    Rose & CHEVY, I will join you two for coffee & sweets. I like there chocolate croissants.

    Rose, sorry you are STILL waiting for meds. I would be getting cranky. Graduation day sounds like it was a hit. I hate that feeling when the hair is falling out. I must have a sensitive scalp, cuz it hurts.

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

    image

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

    Rosevalley, I hope you are being able to survive this weekend with that nasty UTI. Sure hope some Dr called in something for you. Sun is shining bright today. Hope you have a nice sunny day. Prayers and thoughts are with you.

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

    Nope nothing called in on a Sunday. The good thing is I have no feeling in my bladder from cytoxan so I am not miserable. It just taxes my system to be fighting an infection for longer then necessary. I shouldn't be surprised because this is the same NP who refused to do anything for me Christmas Eve when I was miserable with N/V and drove an hour up to their office for help and this woman said go to hospice or the ER I will do nothing for you. Ho Ho Ho Merry Christmas from your Catholic provider. Here it is 6 months later and she still does nothing. I am not surprised. She has never been an advocate for my health and I have refused to see her. Why she even bothered to email the results of the UA I am not sure. This only cements my opinion about how mean she is to me. I will call on Monday. My MO is nice thank goodness.

    Anyway got to take my kid to camp. Nice and sunny finally. Could be a little warmer. Wish the taxol was making a difference in the fluid I drain off but it isn't. I ate lunch and I have not puked anything in 5 days yay. Have a nice Sunday.

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

    So thankful that you have stopped vomiting. Life is much better when things stay down. I would complain about the NP. That is just not right. Why is she in the medical field if she doesn't want to help people. So glad that at least you don't have feeling in your bladder. Guess that is a plus. You hang in there. Prayers always.

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

    I think you have the same nurse from that movie the Misery. A few apples make the whole group look bad. She brings bad name to Catholics (I am not Catholic) and those who follow Christ. People without compassion should not be health care providers. In a way it's good you have no feelings in your bladder. The burning and spasm of UTI are horrible. Why do urgent and emergency problems seem to come during the weekend? Hang in there. It is so encouraging to read that others have good result with Taxol. Praying the same for you

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

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