Chemotherapy for Stage IV
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Glenna, AlaskaDeb was before my time on bco too. I just did a search in Search Keywords...I typed "Single Pink Rose for AlaskaDeb" Very heartwarming and I find it very uplifting too. So I will search out a florest in PA and try to get it started.
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Hi all!
I'm so very sad to read that we have lost more precious sisters:(. I've had a month or so of lots of hiccups. Sorry I worried several of you. Thank you for all the sweet notes. I had to stop treatments for a couple of weeks. At the end of the abraxane severa weeks ago I had some bad weeks. Could hardly get around..ended up passing out a few times. Found out my EF was in the 30s...they made me stop all treatments. Except for faslodex I was devastated. Then they upped my heart meds..so got even more dizzy..so it was a fun cycle. But my ef came up on the new meds and I got to resume treatment Monday. Yeah! Never thought I'd be so happy to be back on chemo. Please know you are all in my prayers and the hubby prints out this thread for me weekly. It helps me to feel connected. Please keep your chins up and stay strong!
Love and hugs
Kimber0 -
Yeah Kimber!!! Pulling for good results as you resume your tx!!
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Ref Reesie - I started a 'Pink Rose for Marie' at a florist in her home town. If anyone would like add a flower here are the details:
Jerry's Florist #856-317-9402. If after hours (10:30-6pm EST) call 856-283-8569. Leave a msg and they will call you back. Tell them you want to add a flower to Marie Giebel's arrangement. The florist is giving discounts on the cost, bless their hearts. The DEADLINE to add your flower is FRI, 8-17, BY NOON Eastern time. Debbie is the sweet girl I spoke to, but anyone there will be able to help you.
Pink rose - $3.00 ea Pink Gladiola - $4.50 ea Pink Tiger Lily - $6.50 ea The card will indicate that she is an angel now, from her BCO sisters, may you rest in peace.
God bless you all!!
Sue
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I haven't been here in a few days - just not felt well and time constrants from other things that required attention.
I am in tears, I can't believe we have lost Reesie - I just want to scream.
I was here and was part of the pink Roses for Alaska Deb. The florist pulled in extra people and it worked beautifully. I hope the same for Reesie. I have my scans tomorrow and will take my laptop so I can get my order in. This just gets harder and harder - I do know that there were lots of very lovely ladies ready to take Reesie's hand but all of them should still be here. Rest, Reesie, - you gave us strength, courage and a part of your heart. You in turn took part of ours.
Love to all - I'm so terribly sad. I'll catch up later with everone. Brenda
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I love the pink roses idea and will definitely call in my order tomorrow. I think it is a lovely gesture and I know Reesie's family will appreciate it. Still can't believe she is gone.
The best news of the day, though, is hearing from Kimber. Yeah! Hip, hip, hooray. So glad things have straightened out for you and that you've been able to resume your treatments. I know ... it's crazy how much we WANT to be on chemo. I really don't like chemo breaks at all. My onc suggested moving my doxil from every 4 weeks to every 5 and I said NO WAY!! I'd get it every 3 weeks if I could! Welcome back, Kimber. It's so good to see usafmom posting!! Just visit us whenever you feel up to it.
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I will order my rose today. Thanks for getting the info for us, Sue.
Glenna, I am going to PM you about the doxil. Have you had any neuropathy? Am almost positive it is goodbye to the Adriamycin for me....my EF from the echo yesterday was between 35 - 40. The cardiologist's office called me as soon as they got the results and I now am to take two coreg twice a day in hopes that it will help the heart pump and get the fraction up higher. I have a deep nasty cough this morning and don't know if that if from the meds or the start of congestive heart failure. When the nurse told me, I said I HAVE to be in shape for my trip to Europe in Oct and she said We're going to get you there and I was thinking Yes, but will I be able to do anything once I am there. I do notice I am getting out of breath a little if I walk any distance, like as little as a block, but it could be that myxoma. Never a dull moment.
Hope you check in often Kimber.....we all missed you.
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MaryB - YOU WILL go and do...you are an inspiration.
Kimber - please...ck in when you can....(((KIMBER)))
Hi Glenna!!!0 -
Kimber, sorry that you had problems with Abraxane at the end of the treatment. Hope things are better for you now.
Did any of you notice that the nausea increased with each series of Abraxane? Something sure going on that nausea is a problem
Marybe - I understand that you wonder what kind of shape you will be in to make the trip but here is hoping things will improve and you will get there and have a fabulous time.
I called to order two roses for Reesie - the lady was so very nice. I hope there has been a huge response for her.
Finished the 9 Abraxane treatments and had my scans today to measure how well the treatments have worked. Not sure if I will hear anything tomorrow.
Have a good night all -
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Hello sweet souls! Thank you for being you! Glenna, Laurie, Sue, marybe and Brenda I hope you all keep up the strength..to the new gals I look forward to getting to know you.
Brenda ..I hope you get the best results ever! Abraxane was tough for me but FEC was my worst chemo. Praying for good results!
Marybe I hope you get to enjoy your trip and you know it is still fun if you are with the ones you love.
I will call in the am to order my roses first thing. I think this is a wonderful idea but next time we have a precious soul who is sick in her last days....we should think of sending flowers to her while she is still here if we could:) I just think wow that would make someone smile! She will be smiling from heaven!
I'm on a new regime of tykerb, faslodex and herceptin..not enjoying it at all. I have the acne of a teenager
Nearly lost my cookies today when my son drove me to the grocery store and my intestines are running faster than anything. I do have weird SE ..just curious if anyone else has had their feet peel. I've been losing the skin off the bottom of my feet for several weeks now..they are bloody and very painful when I walk. We've tried steroids..fungals..but nothing seems to help . Just curious as I see the podiatrist again tomorrow and I surgeon. Not sure what they think they are going to do..lol..maybe transplant some of my posterior to my feet:)
Well ladies I have missed you all so much and as always your in my prayers!
Hugs
Kimber0 -
Kimber so good to hear you're having good dayes too. I'm back to bald and tiredness but hey I'm not going anywhere til this damn house is sorted!
Big hugs
Lx0 -
Maryb, You are going to have a great time in Europe....I just know it.
I'm going off chemo now, not sure for how long but am surely happy.
The allergist wrote an exact recipe for my chemo with premeds and steroids and very slow drip. Somehow, the oncs didn't get it, the chemo nurses did not give me any premeds etc. Only thing procedure followed was the slow 6 hour drip. So, this week, my mouth swelled up again, mycough returned and I fell apart. I called, finally got through yesterday. My nurse liason apologized again and again. I told her I understand, things happen..... but I want to get off this chemo.
So, she said ok! Of course, that is depending if the scans are still good. I'm going for my scans next week. I'm praying for some good news, just want to feel like myself again for awhile. I know the mets will return eventually but I feel like they would return with the chemo too. Terrible as this allergy is, I'd like to keep the abraxane as something I can return to when the mets resurface. If I stay on the abraxane, I will need to go to something else. That's scary to me.
So, I'm hoping, hoping, hoping.
Naniam, I have my fingers crossed for your scans.
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Oh Soleil, I hate you didn't get the allergy premeds - dang it. So you are off treatment until you have scans and see what they show, is that correct? Then they will decide from there what you do next?
Marybe, I do think our oncologist like for us to make "dream trips" and they have time to get things under control too. I know I had mentioned to my oncologist that I had always wanted a trip to Ireland - he told me to make the plans and he would get me there. So you feel that is it with the Adriamycin - and that you will now go to Doxil, do I have that right?
Kimber, I am new to lots of these drugs but is the Tykerb not one that also causes the painful hand and feet syndrome and you have to ue the special creams on - same as you do with Xeloda? Good luck with the combo.
Phone rang early this morning - was DD. THey have decided not to come home this weekend but next. Hopefully, I can clean out some areas in the house and we can sort and take items to Christian Ministry.
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Kimber, I too have thought of that, it's jes that once we end up in the hosp or home care, we don't have contact info (most of us anyway) to send a 'sea of pink' to them. I think I will revisit this and mayb on our profile would be a good place to put contact info? You make me laugh girl, take skin from your posterior...LOL. I am jes sick at heart to hear of this painful se, hope you get some answers from your docs about how to treat it. Sounds sooo incredibly painful..(((KIMBER)))
Soleil & Nan - will keep praying that the scans show wunderful results!
Alesta - BIG HUGZ to you...you have been so strong thru all of this...you Rock!
Hi and Big HUGZ to MaryB and Glenna!
Celine told me there is a Wall of Angels on the Commemorating forum where we can post pics n such for those we've lost. I am hoping to get a pic of the flowers for Reesie...if I do, that is where I will post them.
Love n Prayers!
Sue
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Oopps...It was Celia who told me about the Wall of Angels...sorry C!
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I knew there was a wall of angels but always thought it was just the name and the date of death. I always hated that - put that on tombstones but seems there cold be a place that was a bit warmer than that. JMHO
My scan: all I got out of my oncologist is that he got a call from the radiologist and that my bile ducts are quite enlarged when compared to previous scans. He questioned me about my gallbladder surgery and said it could still be a stone. I told him that my gallbladder surgery in 2006 revealed a chronically inflamed gallbladder with sludge and one very small stone. Told him that I had been having lots of nausea, having trouble eating and was having distension and pain. That I didn't think it was a stone from my gallbladder surgery. I ask about my liver but he didn't want to make any comments until I have a MR-CT of the bile ducts -they got that scheduled for tomorrow (Sat) at 4:30 pm. I ask about my scan in general - said didn't show anything we didn't know about the bones. My oncologist is one not to talk until he has this "issue" resolved. So won't know until Monday what the MR-CT of the bile duct shows and if all is ok and I continue on the Abraxane.
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Hello Ladies, I figured I should check this board to see just what is going on. I am so sorry to read that you've lost some dear friends. I have to say I really like the "PINK ROSES" idea. Just lets people know that there are many who share this road.
Thank you Marybe for the explanation on the EF readings, at least I will know what to ask about. I feel so uneducated about all of this and just don't know where to look sometimes. I think that's why I feel more comfortable talking to people who are in the same place i've entered.
Lilylady, Thank you for the thread to Perjetta. That has become an education in itself.
I surely hope you all have awesome day, and an even better weekend!
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Nan - The List of Angels is the name and dates. The Wall of Angels is much warmer. People can post pictures and the like. It hasn't been used in years tho, so I thot I'd mention it as I didn't kno it existed and I kno others that don't kno it exists. Some said they would like to revisit and with us all living 'around the globe' I think it's good. I'd like to see pics of when they were smiling, etc. Anyway....still doesn't sound like you have any answers....and to have to wait til Monday...ugh. Waiting can be hell...I will say extra prayers and send extra positive healing energy to you this weekend ((Nan))
LoriK - Thank you for your thoughts....this is a great place to find info and share with others going thru it. Please keep us posted on how you're doing!
Hope all are having a good day. HUGZ!
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Kimber-I was on Tykerb for 4 months (with xeloda) and it wrecked my feet. Blisters and peeling on the balls of my feet. It would get a little better on the off week but I walked on my heels a lot. I tried many different creams but the Eucerin worked out best. Slathered it on and just laid with my feet in the air. What dose are you on? They might have to dial it back a bit. I took 4 every morning and 4 more at night. we kept trying to get to 5 but never could do it. I kept getting a horrible rash on my arms that itched like crazy. I have quite a bit of scarring from it. My fingertips cracked and peeled so I wore lots of bandaids. I wore steel toed boots for work and had to get special permission to wear tennis shoes. Unfortunately it quit working and I am off work noqw-BOO!
Funniest thing about the peeling-I went to Fla with my friends and they were so jealous of my "baby fresh" feet. They were so pink and soft and looked like they had never been walked on. It contrasted with the tops being so tanned.
Nan-I hope the weekend speeds by so you can get your scan results. The waiting is the worst. I am surprised they do your other test on a Saturday-especially that kate in the day. Hopefully they can get those results back so you can learn everything at the same time.
Soleil-what the heck is wrong with that place that they can screw something up that bad. No apology os big enough. Can you go over someones head and register a complaint? I hope your scans get you great results. I took a chemo break in the month of May. I actually only missed 1 cycle becasue I was 2 weeks on/1 off but it did me so much good bith mentally and physically. Unfortunately it got followed up by a bad scan but I had so little faith in it working anyway. The previous scan wasn;tthat great. My onc was all worried i would be blaming myself for taking the break but I told him if it is so fragile that missing 1 cycle could cause this screw it anyway. I don;t look back and I don;t regret it. I had a fab vac and got all my gardens in so it was worth whatever the cost was
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My onc is pretty terrible, I think. I'm not sure what to do at this point. I'm at the best hospital there is around here. But she kind of stinks it up. The allergist was awsome. The onc dropped the ball. I was supposed to get an appointment call for scans today. No one called. Oh boy. I'll call on Monday. How could a patient lodge a complaint and stay in the facility? Thats my problem.
Lily lady, I doubt a month hurt you. I think if anything it helped you. Mental joy is important in this fight. It helps stoke the strength fire....my little theory. Do you have a picture of your gardens?
Naniam, I'm waiting with both fingers crossed for your scan results. Feel like I need good news from an abraxane sister.
Hoping wishing and praying for us all!
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Soleil - Contact the Patient Advocate of that faiclity you are using. They are Obligated! to help you with any problems you have. Don't delay...Call on Monday and ask to speak to them. Waiting to hear some good news...in the meantime...praying my everwideningwhitebuttoff for you...(((Soleil)))
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MemaSue, Thank you! Thanks for the advice. I'm doing it on Monday. Didn't know where to start. Thanks
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Soleil, is there another oncologist at the hospital that you could switch to? In the early months of my Stage IV diagnosis, I sent some emails to my oncologist and let him know I was not happy that he was not prepared for my visits. I did say that I knew I was a patient that wanted to talk and understand my scans, etc. and if that required more than he was willing to give then he needed to refer me elsewhere. I certainly think after what happened you should have that option and it also is quite ok to let your oncologist know that you are unhappy and that she dropped the ball.
I hate the thought of entering the MRI machine again. My GI SIL talked with me awhile this evening. He feels that I will still be scheduled to have the ERCP to look inside the duct. The scan tomorrow might shed a clearer understanding of what they might find but the only way to know for sure is to do the ERCP. I've been meaning to look to see if there is anything about the bile ducts being enlarged while on Abraxane.
Lily, this is a large medical teaching facility and the MRI facility is open 24/7. I've had some MRI's scheduled as late as 7 pm before. At least by having it done tomorrow, the oncologist can decide his next move when I see him on Monday.
MemaSue, thanks for straightening me out on the"List of Angels" and the "Wall of Angels". I only knew about the "List of Angels". Are they both in the same section?
Time to turn out the lights- Blessings to all
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Hi all,
It's my fabulous grandson weekend and I just got him to sleep. I'm tired but wanted to log in and see how everyone is doing. Lots of activity on this thread again. Marybe, I really haven't noticed much difference in neuropathy. I've had it since my first chemo in 1987 and it's just "there" all the time. In the winter it's worse but it's not something that really bothers me. I don't have trouble picking things up or buttoning clothes and I've heard some people have it that bad. No Hand and Foot syndrom from the doxil either and sure am glad of that. Sounds like Kimber and Lilylady have had to deal with that. No hair loss either!! Truthfully, the only SE I've really had is the disturbance of sleep patterns. I get reallly tired and sleep a lot, then can't sleep at all. Sometimes I stay up all night and work on my photoshop tutorials on the computer ... or .... gasp .... play words with friends. Kimber, I love your idea of pink roses to some of our sisters who are just having a hard time. The problem there is that we don't even know full names, where people live, that kind of thing. I know there have been card showers for some people who have shared their addresses and that is pretty cool. Soleil ... OMG, that is terrible that you didn't get your treatment administered properly. You could've had a terrible reaction. Definitely contact the patient advocate. That should NOT have happened. Naniam ... crossing my fingers for good MRI results ... what is an ERCP .... guess I should know that but am drawing a chemo brain blank. I had an echocardiogram last week but haven't gotten my EF results yet. I feel sure they were okay or they would've called to change my next chemo. I also didn't know about the Wall of Angels. Will see if I can find it. I do like seeing pics of our great friends. I like Laurie's avatar because I SEE who she is. Laurie, you are an inspiration. Hope you NEVER get your house sorted .... then you'll be around forever!! I told my "adult" kids that I didn't want to go anywhere til they were all straight and living adult lives (they're not) ... my daughter told me I'd be around for a very long time if I was waiting for that!! LOL! Okay, signng off here. Hope everyone has a wonderful weekend and that next week is a good news week!! Blessings, Glenna0 -
Aw thanks Glenna! My husband keeps telling me to sit down but I always find too much to do!
Glad to hear you had a great time with your grandson.
My sister and niece came down from Edinburgh for the weekend and along with the kids got involved in transforming my little summer house to look like an old fashioned seaside beach hut. Not quite finished but hope to garner some energy towards the end of the week.
Just waiting for bloods so I can hopefully have my second dose of Halaven. Taste buds have gone, sight is rubbish due to the steroids which I can hopefully stop at the end of the week. I have gone from 0 reading glasses to 5 pairs so I can tap away on my phone and read my kindle!
Worst SE has been my mouth which is full of sore bits and I find it really difficult to eat anything. My friend who is a dentist has given me some stuff which is supposed to rebuild the lining of your mouth so fingers crossed its going to work!
Hugs to all ((((())))) lx0 -
A seaside beach hut? That is what I want to do to my front room. I'm trying to decide between a shore room or a cottage room Place is small but very cute. I just to update this front room
Can you post the pics? Might have to put them on another thread. Like "Things to do while on Chemotherapy"
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LOL Soleil re photos. I'm so useless I still haven't worked out how to do it (although I know the theory...)
Think I'm going to do a photo page somewhere out there on t'internet. I have loads of stuff I'd like to get out there but it's all time, time, time...
The beach hut is done in 2 colours - a nice bright yellow and a light teal colour. Not finished yet as someone handy with a screwdriver needs to take the doors off so we can finish. We have across stripes and down stripes and it's looking pretty beachy!
The irony of this is that we are in Geddington in England which is about as far as you can get from the sea in any direction! Nearest beach, Hunstanton which is about 2.5 hrs drive...
Still, once the Mexican hammock is up and swinging and I can hear the water from the brook near our cottage, I could shut my eyes and be there!
Lx0 -
Hi Ladies! Just a note to let you all kno that Reesie's info is posted on the Wall of Angels in the Commemorating Loved Ones forum. There is a picture of the beautiful flowers we all sent.
Love and Prayers,
Sue
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Hi all,
Sue the flowers are so pretty! I can only imagine how much it meant to her family. I did a donation from all of us in Dawns honor and sent an email to Rick. I posted a link to the card he will get from living beyond breast cancer. I guess we need to add her to the wall of angels too. I'm not good with adding pictures but there is a nice one of her online. Just getting treatment now and feeling pretty yucky. Dr lowered tykerb..I'm hoping only 2-3 pills is enough. I did lose another ten pounds which is good for my heart..I'm over weight.
Laurie keep your chin up while your in the hospital. Glenna so happy you had a good weekend. Soleil prayers for today. Brenda and marybe keep hanging in there. Sorry I know I'm forgetting but meds have my head spinning.
Hugs to all
Kimber0 -
Kimber, thanks from all of us for the generous gift in Dawn's memory. You are a sweetie for taking care of that and including all of us! August has not been good to us here on BCO. Hope you do okay with your treatment. Is tykerb the one that was giving you the trouble? I don't know much about it. Do you take it everyday? I've lost about 13 pounds in the last couple of months. My onc had told me I would gain about 10 pounds a year on the chemo and AI's and I had but just suddenly started dropping a little her and there. It does seem like it's all water weight that I've lost. My abdomen was so swollen it was stretching the skin but looks normal now. If I forget to wear a belt I might be showing the plumber's crack .... LOL!
Sue, omigosh, the roses were so beautiful. I'm so glad you were able to get a picture posted. Thanks so much for arranging it and making it so easy for the rest of us to do our part. The gal I spoke to at the florists was so sweet.
Laurie, I've got to look up Geddington on a map. Your cottage sounds so beautiful. I can just see you lounging in your hammock enjoying the sounds of the brook. There is just something so refreshing about the sound of water .... ocean waves, babbling brook, rushing falls .... it doesn't matter what. Hope your mouth sores are getting better so you can enjoy food again. I haven't had mouth sores from the doxil but do have the teen-age zits right now ... hope that is a very temporary side effect as it's not too nice to look at!!
When my taste buds were bothered by taxotere I would suck a lemon drop before eating .... it really did help. You might try that.
Naniam and Soleil .... any news to share? Marybe, what are the dates of your Europe trip? What's going on with your chemo? Have you started doxil?
Nap time for Glenna .... hugs to all!0
