Halaven - Day 1
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Thanks Kyla.
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i am coming on board, after calling everyone I know . once again a big thank you to GG27. I called my MO's office and left a message with his secretary to maybe take my file to a board MOs she phoned back saying will take it to the board on Tuesday well a few hours later the MO called me and said he talked to a couple of his colleagues and the doctor who has been looking after me the last month. My other doctor had been on holidays for a month. And the doctor who has seen me says I am strong and well enough to take another chemo.
It will be weekly Doxil . I can't believe what been through in a day. I know there are no guarantees but at least I know they didn't give up on me, well actual they did, I didn't. Just think if I hadn't called today I wouldn't have been given this possible extension on life.
I am so hopeful, never give up
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Oh my God, Kayla...Maureen. I’m so glad you made that call. What an emotional time. Deep breath. Where there is life, there is hope. I am on monthly Doxil. I’m pretty sure the dose is lowered if you get it more often.
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Liwi, I'm sorry to hear how serious your situation is. You sound weary. Sending support and love.
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hello all,
Liwi, I'm sorry to hear of your situation, I'm new here & haven't seem you before, so it's particularly hard to hear your news as we are only "meeting" now.
Kayla, i was so happy to read your post. fingers crossed that doxil is gentle and effective, boy that sounds like a laxative commercial.
it was a long day for me.... i had a Dr's appt which requires travel for me, lining up for the ferry early, so we are always very aware of having to be there to not be left behind, anyway, yesterday my DH didn't want to shave my head even though my hair was falling out in masses. Nope, nope, nope we had to wait til half an hour before we had to run to do it. what a mess! oh well, the deed is done. but the funniest thing is the first person to see me today says "OMG, I love your hair, where did you get it done??" i really wanted to say at the chemo lounge, but I was nice and told her it was a wig. but I always wonder, is my real hair really that bad???? we all had a good laugh.
good nite all, cheers, dee
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Maureen, I have been carrying you around in my heart since I read your post. I hope you continue on these boards, your voice is important.
Liwi, sending you love, friend.
Will write more soon.
Love from JL
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liwi - would love to hear from you. You have been on my mind these last couple of days. I am so hoping you were able to read my second post of hope. Is your pain controlled, are you at home yet? Please give us an update whenever you can I know these are hard times, so hard I don’t be think there’s a word for it. But know you are thought of here.
Shetland - yes, i’ve been told that it is a lower dose and is a little easier on the side effects. And I hope they are because for some reason Halaven has been hard on me, but the liver mets are probably more to blame than anything, I need them to shrink.
GG27 - thank you for giving me courage to second guess the lines available.
Jaylea - I am so grateful for thoughts. I hope you too where about to see my post that they will start another treatment. Good news but still in shock over Wednesday’s miss information. Although I found my voice in this thread, I tend to lurk on others and not post much, but I think I’ll change that. I’m in Canada and for some reason I am not as knowledgeable as those down south...I think I’ll ask for help on the liver thread.
You all are in my thoughts and prayers....
Mauree
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kayla,
that's what we're here for, love, support and courage.
cheers, dee
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Maureen, I'm so glad to read your second post and that another treatment is on the table.
Liwi, I hope you're home from the hospital and have had a chance to talk to your MO. I know you like and trust her.
I've been thinking a lot about Maureen and Liwi and my own likely progression and am feeling unmoored. I don't seem to have words of comfort other than to say how important you all are to me. The intimacy we share here I don't even share with my own family. Like Dee says, we're here for love, support, and courage, even when we stumble at it.
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Hello everyone, I am new here as I am only on my second cycle. I have read back from January this year to see how Halaven was affecting everyone.
My first cycle went badly and I ended up in hospital with fevers, so I didn't have the second treatment but rather waited till I was due for my next cycle, this was Wednesday. My dr gave me dex8 beforehand and I didn't have any fevers till Friday evening. I took 2 panadol and my temp came down. This has continued over the weekend though my temp was not as high as cycle 1.
Kayla, I am so glad that you are able to have more treatment and I hope that those liver mets shrink away.
My thoughts are with everyone on this treatment and those that have moved on to new treatments. Hoping for no side effects, take care everyone
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Kirstensmum, welcome. Since you read earlier posts, you'll know that a few posters had issues with fevers, too. I've had a couple of cycles where I got feverish, but nothing that a couple of Tylenol couldn't address. I'm so sorry yours was enough to land you in the hospital. I can only hope things settle down as your body adjusts to this new treatment.
Once again my ANC has tanked, and this after my week off. I thought it was a one time anomaly, but here I am again. I will test again tomorrow morning to see if I can get treatment tomorrow afternoon. If not, I'm fine missing this week, since I suspect I'll be moving on to another treatment anyway. I have scans Tuesday.
Wishing everyone a peaceful Sunday and good week ahead.
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Just stopping to say hi... I hope everyone enjoyed the weekend. Im still on an emotional rollercoaster. But go for bloodwork tomorrow, thendoctor and new doxil treatment probably on Tuesday.
I am sadden for leaving the thread of course because it failed, but also because I won’t see all you as much.
Kirstensmum - I hope you have success on Halaven. I leave you in good hands.
Thoughts and prayers to all
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Maureen,
As I was reading your "good-bye" I was thinking in the back of my mind, you have to get another opinion, you have to go further with this, don't just roll over and accept what you were told. So as I kept reading, I see you did exactly what I hoped you would do. I'm so glad you did. We all have to have hope and when that hope is taken away, what are we left with? It can't just be memories. The human spirit is amazing and it needs hope. I just know you're not done, not yet. Thank you for taking action and sharing it with us. You just gave us all a gift and at such a wonderful time of year.
Amy
PS - you don't have to leave this thread. We would love to have you check in and let us know how you're doing.
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Maureen, seconding Amy that you stay with us on this thread. I reread your second post and totally agree that you're strong and ready for another option. I feel that way, too. I'm awaiting results from yesterday's scans. DH asked me if we're out of options after Halaven. His comment took me by surprise, that he was thinking that, but I reassured him that I still have a couple of options left. I may be joining Pajim and Maureen on the Doxil thread.
Funny, when I first was on Halaven, I had a pretty rough time of it. But after the month break, I really had no problems, weight was up and so was energy. Now that I've likely progressed, I sure wish I had more time on it! Of course the break could have caused the progression - what a Catch 22.
Kirstinsmum, hope your fever is under control and you're feeling better.
Liwi, thinking of you.
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Hi everyone,
Jaylea, I was glad that I read the previous posts as the information there helped me realise that it was more a side effect that others also had. I'm grateful for what others post as it lessens the anxiety.
I went in for my chemo yesterday and my oncologist let me know that after only one cycle my tumour markers dropped by 36 points, it was the first time this has happened so quickly on any chemo. I don't have another blood test till 1/1 so won't know how cycle 2 bloods looked, I only have a blood test before each cycle not weekly. My dr also gave me steroids to take on Friday and Saturday morning so hopefully that should keep the fevers under control but also take panadol (assuming this is Tylenol) but if I feel sick as well, go to hospital.
I hope everyone is doing okay and any side effects are minimal, and thank you for welcoming me to this thread.Take care xx
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AmyQ - thank you for inspiring post.. I have grown partial to this thread and will keep it in my favorites to keep up. My past week has be à whirlwind of emotion, but had my first doxil treatment yesterday, and yes I had to see the same doctor who gave up on me last week, he is not an oncologist just a GP with a little education in oncology. So i will never take his word again. It was awkward but at least he got to see me brave and up for the battle.
Jaylea - thank you,too. I sure hope your scans come back stable, if not better than stable, I like the word regression. It is a scary place to be, catch 22, but there is options. Your DH will be in my thoughts too, he must have been terrified.
kirstensmum - I too did had a fever but only once, they didn't find a source for a fever so they released me. Now that is type this I think we, on this forum, might have a bit more knowledge about these drugs then the doctors do at least side effect wise.
Hope everyone is doing well.
Maureen
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I had a fever this week for two or three days. It was during week one of Doxil #2. No way was I going to report it unless I had some other reason for concern, which I did not. I think this is just what my body does with chemo infusions these days. I am not recommending this to others, just sayin’ I couldn’t bear another one of those hospital stints right now when I just know there is nothing really wrong.
Jaylea, on feeling unmoored... I feel like I have lost my balance. Those of us who found our way to the Halaven thread have likely used up all the hormonal therapies (if applicable) and Xeloda. It feels to me like a second phase of stage iv where things are getting scarier. I find myself thinking too much about how much time I might have left. And I am having a lot of trouble with fatigue and inertia. I told my onc, and she connected me with a counselor at the cancer center, and am starting to get some insight.
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Kirstinsmum, great news on the reduced tumor markers! Let's make that the new plan. I hope as your body adjusts to the new med your fever will diminish. Don't be afraid to take the steroids. My MO said that it actually helps with the cancer by reducing inflammation in the body.
Shetland, arggh for the fever. You're right, this sounds like your body's way of coping, and your plan sounds wise to me. Keep an eye on it, don't let it rage out of control, and ride it out when you can.
I got my scan results today. Sternum pain is due to a crack in the sternum. MO is referring me to RO for rads, and also has orthopedic surgeon reviewing the scans. She doesn't think surgery is on the table, but good to cover the bases. I've got new liver met activity, so will be off Halaven and on to Ixempra plus Xeloda. MO said combo should be tolerable, with HFS a possibility with Xeloda. I won't start the combo until I've completed the rads. This is my first real pain issue on my journey. I'm lucky on that front, I know.
I took a quick peek at the Ixempra thread and it looks scary. I think I'll stay here on the Halaven thread for a while longer...
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just checking in with the gang. I see there hasn’t been any activity I hope this is all good news. Or
Maybe everyone has just moved on to over treatments.
Wishing everyone a hopeful start to 2020.
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Maureen, how is the new chemo treating you? (Doxil, I think?) I hope you're doing well.
We had a nice, quiet NYE and on New Years Day, we kept up an annual tradition of going for a long drive. We started it decades ago as a way to keep things sane the night before. Each year we drive to a different place. We always manage to find an open restaurant somewhere for breakfast, and with luck, a Ramos fizz...
I've had 1 of 5 treatments of rads to sternum. Hopefully it will ease the pain so I can get off the Tramadol. I start the new tx, Ixempra and Xeloda, on the 13th. I'm mildly worried about HFS, as I read with horror on the Xeloda thread. I asked MO about going in on a lower dose. She countered, saying only 30% of women get HFS, and if I experience anything to immediately stop the Xeloda and contact her.
I love Maureen's wish that we all start 2020 with hope. Hugs from JL
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Hi Jaylea Wanted to tell you don't be afraid of zeloda. I've been on it for 4 months and it's treated me kindly! No GI issues, no nausea, no diareahha, (sp). And most importantly No HFS! I do not use any creams at all. But, on my second week the fatigue is extreme but, I can live with that if it's working. And my legs feel a little wobbly although that could be left over from Taxol.
Three month scan showed it worked in some areas but not others. So we're giving it another three months. PS Your onc may be fibbing. I've read numerous articles that says HFS occurs in 65% of users.
I wish you well on your new treatment protocol.
HUGS
Edited to add the reason that I'm on this thread is if we drop Zeloda,, Havalin is my next tx.
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Hello everyone.
A belated happy new year 😊 I have spent most of the Christmas/new year break in hospital. Initially on Christmas Eve with mouth ulcers in throat and mouth, very sore but then on the Saturday (28th) I ended up with uncontrollable pain from the liver and a high fever that came out of nowhere, last chemo was the 18th, apparently one of the tumours on the liver has grown and when I breathe it hits the diaphragm??? The palcare team came daily and increased my pain medication until it settled. I came home on Thursday. While in hospital I had my chemo and my oncologist reduced it a little to try and stop some of the side effects because even though one of the tumours is out to 6 cms another tumour had reduced in size. The rest remain stable. A mixed bag but this chemo has reduced my tumour markers so I still have my fingers crossed 😊
I hope everyone's treatment is treating them kindly without any nasty side effects and that 2020 brings good luck for us all. Take care xx
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Ah kirstensmum, what a crap way to end 2019, which was a double-flusher of a year in my book. I'm crossing my fingers, too, that the worst of the SE's are behind you and that you'll see more positive effects as time goes on.
Snooky, thanks so much for the encouraging words. I've heard from others that say Xeloda is possibly one of the easiest tx they've been on. So trying to head into my first round with a positive attitude. PS, I think you're right about my MO "misremembering" the stats on HFS.
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Yes, Happy belated New Year! I feel like the rug has been pulled right out from under me, suddenly. I went from tolerating the treatments and a steady reduction in my tumor markers to a big jump up in my markers AND night sweats, aches and pains and an overall feeling like Shetland Pony mentioned of being at or near the end of possible treatments. I too have been through all the hormonal drugs, and two IV chemo, first Cytoxin and Taxotere in 2013 and now Halevin since October, 2019. My dreams are unsettling but my daytime thoughts aren't any better. I can picture my passing, my funeral and my children and grandchildren's sadness.
I'm starting to panic and am taking more lorazepam while trying to escape reality by watching uplifting movies and television shows. Anything to distract me. Our weather has been too icy for me to ride my horse, but at least he's there for me to groom and snuggle... I love the smell of his coat. This is so soothing and distracting but as soon as I head for home, the overwhelming feeling of imminent death clouds my head. I start thinking and remembering the lovely women on BC.org who have passed before me and mourn for them and their families.
I've had almost 7 years (February 13, 2013) since diagnosis of BC, but always want more.
Day 8 is next Monday and January 22, 2020 will be my next scan but I already feel I know there's progression. I am just not sure where to turn next. I recall my oncologist saying she didn't have much left for me. It helps to write this out and share with you all.
Sorry for being such a downer. Nights are the worst. Normally I share all my news with my husband and children but right now I don't want to share anything until I know for certain.
Thank you for being here.
Amy
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Amy, go get a second opinion after your scan! There are lots of treatments out there and there must be one for you! Think about clinical trials. Do you have a research university near you? I thought I was doing great on Halaven until my lymph nodes got larger but everything else was gone.Once they were tested they changed to triple negative so I’m on something way different now. Don’t give up until you know there’s nothing else!
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Amy, I'm sure most of us can relate to where you are. I went through a similar patch in mid-2019 when I burned through 2 treatments in 3 months and having my MO ask, for the first time ever, if I wanted to hear OS prognosis. I went to a dark place and stayed there for a couple of months. During that time I wrote out the order of service for my funeral and my obit. Then, one day, I don't know what changed, but getting out of bed was a little easier, and the storm clouds began to lift. I'm hoping the same for you. Keep doing what you love. Share with us here. Make it through each day, hour by hour, and trust that those storm clouds will pass. Sending you hugs, JL
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Thank you for the encouragement and reminder there are always clinical trials and second opinions. I just hate having the dark clouds and the loss of innocence thinking I will live into my 90's and see my grandchiloren grow and marry. Like my father-in-law always said, "I just want to see how it all turns out".
I will keep on plugging along and hope that my gloom is unfounded.
Amy
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Amy. we all have the bad days. And winter is particularly bad for that. But the sun does come out, at least for a while. I too just dded up the number of chemos left and it wasn't as long as I would like. But there are trials, and new drugs seem to appear with regularity. Wish I was HER2+ these days. . .
Jaylea, I took Madam X for 4 months. I did lotion and it helped. Feet became a problem eventually. The way my doc describes it, Xeloda interferes with the mechanisms that hold your skin to what is underneath it. It's the friction which causes problems. But my hands were never a problem. Some cycles I just stopped the drug with a day or two to go. But other than the feet it was an easy drug. I traveled all over the world on it. I just had to make sure if I was on the road days 12-14 that I wasn't walking miles through airports. [the two times I got actual blisters].
Hang in there everyone! I'm now on CMF -- an oldie but goodie. The first cycle has been way easier than Halaven ever was. Hoping that it's killing many cancer cells but I won't know for a bit.
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Jaylea, do not read from the beginning of the Xeloda thread! I think years ago those ladies were on crazy-high doses. Now with more experience and data, oncs are more willing to adjust the dose. And it is easy to lower by taking one less pill. Do you need tips on how to minimize hfs?
AmyQ, I just started seeing a therapist (mft) at my cancer center, after telling my onc I was struggling. This lady was suggested I turn around and face the fears, and write, and cry, and get it out. Because yeah, I mostly push aside the fear and sadness in my effort to enjoy life while I can.
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Wow, pajim, CMF better than Halaven. I did not like Halaven either. I'm sure you are working hard at recovering from surgery. Golf in the spring?
Kirstensmum, that sounds awful, being hospitalized with that pain. How are you now?
Hello, Kayla! Hello, Wandering! Hello, snooky!
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