Halaven - Day 1
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Hello my friends...It has been several months since I have written or posted anything. Life has not been so good for Robin and me. She has been battling pneumonia and we have just found out today that Halaven has failed Robin. The cancer has spread. Previously the cancer was in her breast and nodes and some in the lungs...hinse stage 4. Now we have found out that the cancer has spead and grown more in the lungs and is now in her bones...femors. Not the news we wanted for sure.
My questions is for those of you who Havalen has failed...what was the next drug or combination of drugs given? I am wanting to start looking up some things and I just wanted an idea of what is out there from a patient's view and not WebMD...or something similar.
We see the onc on Wednesday.
Donese
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Hi all! Much better the last two days. Was able to get my Halaven on Monday which made for a tough week between the antibiotic, pain in the rear (literally) and having to work. Thankfully all is well down under
and it is spring break for me as of today! Kids came home for the day and we had an early Easter celebration. Now to relax. I get a break for 2 weeks this time as I am scheduled for scans on the 16th and don't see the onc again until the 23rd. Praying the Halaven has been working. TM's have been relatively stable (fluctuating from 47, to 49 and back to 47 since I started Halaven. I'll take stable.Donese, sorry to hear about Robin. Praying you find something that will work.
Penny, wish you were going with me!
Have a wonderful Easter everyone!
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Oh Donese, I'm so sorry to hear its not working for Robin and even sorrier that its progressed. You have no idea how much I was hoping that life is good and you were just to busy to post. Please let us know the next step. As for me I skipped chemo this week. I know I shouldnt have but I just didnt want to be sick this week. I just wanted to have Easter Sunday feeling ok. I know I cant afford to do that even though when last advised I was stable. This is such a horrible disease you never know whats next. I hope all of you have a wonderful weekend and know that all of you are in my thoughts. {{{{HUGS}}}}
Elizabeth
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Thank you Elizabeth,
I wish cancer wasn't such a horrible disease. I wish that none of you had this dreaded disease. I'm just so sad...really very mad...I'm hoping we hear a good treatment course on Wednesday.
Thank you for all your support,
Donese
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Donese, they put my Mom on Ixempra after taking her off Halaven. The SE's have been very nasty for her, but everybody is different. I think both Ixempra and Halaven are made from a sea sponge. I guess those "Sponge Bob Square Pants" chemos and my Mom don't get along.
If Ixempra is what they give Robin, study up on the SE's so maybe you can stay ahead of some of them.Peggy
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Thank you Peggy for your information.
Robin has been on Taxol, Adriomiason, Xloda, Ixempra, and Halaven.They all worked for a period of time and then they failed her. She has also had radiation...ugh...I know that there have been women who have had all kinds of drugs until they found the right kind of combo that works. It is my hope they will find something for her soon.
Donese
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Abraxane doxil?
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K-Lo, thank you...I have written those down along with a few others that I have been able to find online. I just want to be prepared when we go in on Wednesday to consult with the Onc.
Donese
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Donese I will be thinking of you and Robin this week. I can't remember if Robin is er+, If she is affinitor/aromasin could be tried. Various reports of ins coverage as not fda approved but some ca tx facilites seem to know how to get it approved off label...new england journal of medicine article feb 9 2012 sent with appeal has brought some insurers around. Hugs and smiles, penny
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Lori, thats some schedule there with work and all the treatments and appointments. Proud of you.
Hey yall, my hair is extremely sparse and incredibly thin....
I wore my wig one day and it looked cute. But when I placed it on the foam head-form, I could see as much of the foam through the back of the wig as I can my scalp now. WTH, now I have to discuss this with the vendor...
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Stop Kathy .. made me laugh with this post. My daughter keeps telling me my hair is growing back, but all I still see is fuzz. After all the money I've spent, I found one wig I like. But I still hate wigs if that makes sense.
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Hello Ladies,
We just got back from the onc and we have found out what Robin will be taking for treatment. Has any one used or tried Taxotere? That is what she will be on for the next 4 weeks. The onc said it would be a rough ride possibly, but he thinks the results could be worth it. Tomorrow she will start. The first injection will also have a drug called Aredia, which helps with too much calcium in the body, which Robin currently has. So the first chemo session will be looong. The rest will just be the Taxotere..as if that wasn't enough!!
I need feedback ladies...tell me what you know!!
Love ya,
Donese
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Taxotere was the first chemo my Mom had. It caused severe diarrhea and blisters which looked like cigarette burns all over her arms. The Onc took her off it immediately when he saw the blisters. I guess it was an allergic reaction so watch out for that kind of thing. She also lost her hair right away. My Mom is very old, and everything has been tough on her. Doesn't mean it's going to happen to Robin. The Taxotere really did shrink Mom's liver mets way back before she had to stop, so it was very effective for her. Hope it does the same job on Robin's mets.
Peggy
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Peggy you are awesome! Thank you for the quick response!! just what we needed to hear...I know it will kick Robin's butt, but I hope that it kicks cancers butt right out to the curb!!!
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So, general bitching about chemo: I was on Xeloda from July to March, then radiation through the abdomen to spine. On these, you constantly prepare for sudden, severe Diarrhea. So, I forgot that most chemo, including the current halaven, and all of my prn meds are constipating.
Took some senna and colace and "Howdy, Doody!"
Feel much more better.
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Donese, I was on Taxotere for 8 months last year and it put me into NED! The first 4 months I also had carboplatin alongside Taxotere, but onc took me off of carboplatin after my second blood transfusion. Looking back, that combo nearly killed me. I lost so much weight. Taxotere by itself was a wonderful reprieve. I slowly gained some much needed weight and some energy as well. Side effects of Taxotere weren't anything above the normal fatigue, white counts, energy, etc. Even travelled to Disney World with my family while on it (although I DID sport my new motorized scooter)! Anyway, at the end if 8 months I had no evidence of cancer! So I may go back on Taxotere in the future since it worked. I hope Robin fares well with it.
I just wanted to update you all on my halaven journey. I had a PET scan last week after three cycles, then one month off because of a nasty skin rash. The results showed overall improvement!! So I'm still truckin' away!! I'm loving halaven and it's minimal side effects! I'm so glad it's working!! :-)0 -
Elizabeth
Thank you for your personal information. Personal expereince is always better than reading information on the internet or in some book.
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I've noticed some increased shortness of breath with my lung mets. That doesnt necessarily mean progression...does it???? Everything scares me these days..
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MamaLizard-Elizabeth, great news. Happy for you and all of us halavenites.
Eag-Elizabeth; I have had severe SOB and coughing spells. Nothing in my tests explains it. I got myself a pulmonary referal and the lovely team took lots of time to go over my scans and my ventilation study. The only thing they can conclude at this time is that the residual bronchial irritation from last year's cough-cold that has created an-asthma type problem. I'm better with an Advair inhaler. But I still get really short-winded, overwhelmed, by climbing stairs, and walking while talking. Very queer but at least I am satisfied that I had several experts looking at the entire picture. Rather than my Onc, saying, hmmm, could be such and such. Hey, if I'm going to live 3-6-x # more months, I'm going to get the best quality of life medicine can give me!
So, that's me, go to experts in the involved system.... not just oncologists! hope you have good luck with your search for a better QOL!
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K-Lo, I had severe coughing spells for several months around the time of my mets DX. Went around and around trying to diagnose the cause. Turned out to be a side-effect of the ACE inhibitor I was taking for high blood pressure. Changed my BP meds and the cough went away. Apparently cough is a common medication side effect.
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The 15 stairs I climb coming into my house kill me! Moving to a new townhouse with stairs...uuuhhh!
Wanted something with a bedroom downstairs to no avail...at least i dont have to carry groceries upstairs anymore. Just from the garage to the kitchen. Do any of you Halavenites, especially with lung mets exercise? I know I need to, but how and what do I do with lung mets. God, I hate this disease!
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hi, i don't have lung mets that i know of; but after 6 cycles of halaven my reds are always low so i get sob easier with stairs or walking uphill even a baby one, if i walk flat only i do better but sob just comes with the territory, it s***ks but i try to pace myself carrying heavy things etc. anyone having short term memory issues or word retrival? my sharp as a pin old brain is more like the dull pin-maybe fatigue related so i guess i should not be so hard on myself. loved my 23 hours on my favorite small island, saw at least 1001 daffodils-new joke instead of 1001 places to see before you diei i have seen 1001 daffodils plan to hang in there and make it 10001 daffodils. chocolate covered cranberries to all
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Memory and word recall issues too...lol. You name it I've experienced it. Have to go back and check spelling, sometimes forget how to spell words. Not looking forward to the steroid confusion this weekend, but its a necessary evil. Those that dont do steroids, does the chemo make you nauseous? Do you feel better without it?
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feel so much better wo decadron, weird feel worse after day 8 treatment but maybe more neupogen shots and tossing down advil, lol ferry ride in high winds was the nausea producer, couldn't down ativan as had to drive after ferry toss
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Ok those of you who have had Taxatere and have lung mets did you guys have an increase in shortness of breath after treatment? Robin has lung mets and they have changed treatment drugs because Halavin had failed her. She was experiencing shortness of breath before yesterday's treatment. I think that she might be experiencing an increase in shortness of breath due to anxiety...perhaps. Called the Onc this morning to find out what to do and he ordered Ativan for anxiety to see if that would help. He said to call him this afternoon if it worsened and then he would determine if she needed to be hospitalized.
You know this disease sucks! It just sucks.0 -
Blechhhhhhh. I am happy to lose my voracious appetite but not to feel yukky all day (Tx yesterday) . I've been trying to go with ginger tea but I guess Ill have to shove some zofran down.
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I'm telling you..I hate this disease to. I just want my life back. I want to be able to do some of the things I use to do. Donese, I read Fitztwins post today and she has lung mets. Has been stable for four years and thats what I'm praying for. Is Taxetere a part of the Taxol family? If it is, I had Taxol when I was stage ii and compared to halaven and adriamycin it was a walk in the park. If I remember correctly, the worse se was joint pain. What we go through I wouldnt wish on anyone.
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Guys year since mets diagnosis coming up...still stable on Halaven for a year...and praying that its ongoing. Havent had to change yet and dont want to...so you ladies send me positive vibes. We can do this..5 years from now, I want us all to still be on this same post. The sad part of all this is we dont know from day to day whats going to happen....I've had some full feelings in my side..concerned, but trying not to think the worse.
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so halaven happy for you! Congrats! eat sushi! hug a sea sponge today!
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Thanks Penny!! First chemo without the steroid added to pre-meds. Fatigued, but so far so good.
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