Halaven - Day 1
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Marybe, I do think it's the Halavan. I have had many muscle cramps and spasms all over at various times since being on this drug. I sat in the bed last night as my foot cramped and twisted. I have also noticed that I have mild edema in my hands and feet and cannot wear my rings. I never had any problem with edema before so I was surprised when I noticed this. One thing I just realized last week was that I feel the most achy on my week off. It seems to start exactly a week after I get my second dose of the cycle and lasts for about a week. It comes and goes during that time but I definitely notice that it's worse. It surprised me too because I kept expecting to feel great since it was my off week. I thought it was the Neulasta but it may just be the way the drug works. I am tracking my symptoms this cycle to see what's going on. Hang in there with me, sister!
Susan0 -
Oh, I am hanging in there with you, Susan. What else can I do? I have completed my two cycles now and I am sure he told me we would do the CA27/29 after two....can't imagine we would do scans so soon. And I am just praying this stuff is working. I hate chemo in general, but what I hate even more is moving on to a new chemo because the first words out of my mouth are not is this this going to work?, is this a good chemo?,..they are What's it going to do it me? I am always so afraid of SEs and it seems most of the time I don't get bad one except for the Abraxane. In spite of these muscle things (at least they don't happen all the time) and the edema if that is what is causing it, and the thinning hair( still have quite a bit) and the constipation, I am finding this to be a pretty good treatment so far as SEs go. I was googling the drug last night and did not see anything about edema so am not glad that you have it, but glad to know it's not just me. I never did have nice little thin ankles, but now my legs are sort of looking like telphone poles...my feet are looking sort of red also.
Yaiyai, Just went back and saw your post. I did not have any bad SEs with Gemzar....just constipation and that isn't much to deal with all things considered...but I was only doing it with Xgeva for my bones so don't know what it is like when done in combination. Good luck to you.
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Marybe:
I was able to get relief from the foot and leg cramps in a couple of ways but had to take lasix for the edema - I only got it in the feet and legs - they felt tight as a drum.
I only got the cramps at night. I used a pillow under the knees and slept on my back and tried to avoid sudden movements. I also tried to do little exercises during the day to stretch out the calf and leg - I point the toe of my foot up to my shin and gently stretch the calf and then flex the foot to keep it limber.
The worst cramp I had went from the back of the lower calf of the left leg right up the back of my thigh - I briefly wondered it I had a blood clot - I guess I didn't or I would know by now.
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Had second treatment of first round today. Low WBC so will go in three days next week for neupogen shots. They don't bother me but going in that many days a week does!! So far the same side effects as my other chemo....nausea a few days, steroid hype sometimes but not always, constipation, tired for awhile then feel good the day before chemo again. The only difference with Halaven is more neuropathy in fingers and toes. Been doing the B vitamin thing for over a year and think it helps. After being in chemo since Nov. 2009 I sometimes wonder if this will truly become a routine to me. I totally spaced on asking any questions at my first treatment!! Ostrich or pro??
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I have completed two cycles and we did the CA27/29 on Wed. when I got the lst of my 3rd cycle along with my Xgeva injection. I called today for the results and the number is 2,635 which I found to be very disappointing. Yes, it was down from the 2,709 when we started, but I had been hearing dramatic drops in numbers when it was working. My onco said he will not make any decisions to change treatment again until I have scans and those are not going to be until later in July. Should I be worried? Today I am really tired and my hair is still present, although very thin on top so I am thinking the hair loss should mean it's doing something, BUT I really was hoping for a big drop in the tumor markers since they were making big jumps when they were going up.....like 300 in a month. This is what I hate most about any treatment, always wondering if it is doing what it's supposed to do.
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Marybe:
My Onc and I are still debating whether or not we quit too soon. As you may remember, my 27.29 dropped around 2300 in three weeks. Admittedly my 27.29 was probably the highest in the world but maybe there is a delayed reaction with this drug. Keep your chin up!
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Marybe, I know you are disappointed with the markers but remember that the scans are most accurate. I read that some meds take 3 cycles to really start to work so maybe that's what is going on. The important thing is that they are going down not up
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Susan0 -
Marybe, maybe they have gone down more - only you didn't have any testing done during that time so you didn't know they went up first. You should at least have relief that they are no longer rising - so that to me means that the Halaven is at least stabalizing things. Give it time.
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Bumping for dfleaman.
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Anything going on here....successes or failures? I had treatment #7 yesterday which means one more and I will have completed 4 cycles or rounds or whatever they call them....I get my bone scan the 15th and CAT on the 18th and will be seeing the onco to go over them on the 20th which is my week off and also I guess depending on if this is working or not, we will either go on or look for something new. Hair is pretty much stable and I know it is not a good indicator, but that and the fact the tumor markers did not go down much have me worried. I requested a liver function panel and will call to get results of that tomorrow.....had this horrible pain that caused me to actually double over on Monday so don't know what that was all about. Neuropathy is not bad and I take Senna for the constipation so this is definitely a doable treatment for me IF it works. When I was at the onco's yesterday, I talked to a woman who started this two weeks after I did and out onco took her off of it because she just could not handle the SEs.....she has nausea in spite of meds, said some weeks she could barely drag herself out of bed and I certainly never had anything like that. Also she's still got quite a bit of her hair left and doesn't need a wig. She was starting Abraxane yesterday.
So just thought I would check in and see if anything new is going on with any of you. I will let you know how my scans come out, also the liver function. As long as everything keeps working OK, I won't panic.
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My wife just completed her 2nd cycle on Friday. Much like you, she has had very little side effects, in fact, she made the comment to me last night that the last few weeks she has felt better than she has for the last year. We are still at least a cycle away from a scan so were in the same boat as you, hoping and praying that it's working. I know she isn't in any pain anymore so I'm hoping thats a good sign that this stuff is kicking some major butt.
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I'm having the second treatment on my second cycle tomorrow. I've had horrible nausea and weakness...this after handling 6 months on Abraxane like a cake walk! I guess we are truly all different. Will be checking tumor marker tomorrow too. Went down 200 after first round. Hoping it is working and that I can get a handle on my side effects but not getting too excited.
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Marybe, Please keep us all posted on your scans and the liver panel. I am hoping so much the Halaven is doing its job for you.
Judie0 -
FF8...wow, that is exactly how the woman I know from my onco's office was feeling and he took her off of it and she started abraxane Wed. and was asking me about what it did to my nails, how fast I lost my hair etc (she still has about half of hers like me) and I was hesitant to tell her how I thought abraxane was the worst treatment I ever was on. Yet here you are saying your breezed through that one so it really is true we all respond differently. Maybe she will do fine on the abraxane also. 1 wk til my bone scan and then CAT the Monday after....who looks forward to scans?...Me, that's who....want to find out what is going on, A 200 drop is not bad....my didn't even go down 75 so I was really disappointed.
Judie, Thanks for the good wishes and I hope the Xeloda is working for you.
Elsjen, So glad the treatments have gotten rid of your wife's pain. Pain can get to be old fast.
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Marybe, Hope your scans give you good news, regression or stabilization and being Ned would be super cool! I sympathize with you in regards if tmt is working or not, when I did Taxol I had lost all my hair then changed to Abraxane and my hair grew back, I freaked out but the onc and his nurse keep telling me that it can grow back when chemo tmt is changed. That lasted for 3 months then I had progression and tmt was switched again. It is very stressful wondering is it working or not plus having SE's when it isn't working. I see my onc this Monday on the 11th to see if my new tmt started on June 7th is working, it may be too early to tell. I hope you are feeling good and enjoying your summer. Please keep us posted, we are here for you to give you support, cyber hugs, friendship. Dawn
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Are there any triple neg taking this, how is it working for TN? I just started this week. Man the bone pain in my leg is bad, no bone mets that I am aware of. I reallllly hope it works.
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Beth:
I feel like I'm a triple negative since I am estrogen positive but none of the AI's have worked on me so I'm on the chemo for life plan. I haven't been on Halaven long enough to really know if it is working. I'm with you...sure hope it does, for all of us. I just finished a 6 month run on Abraxane that I never wanted to end. It's hard going from one chemo to the next but it buys me more life so what other choice do I have? I had some major nausea on this but I got a new, stronger anti-nausea treatment in my IV this week and I'm feeling better. I forget to just ask for relief instead of thinking oh its chemo...you are supposed to feel nausea.
Marybe hope your scans come out great. Do keep us posted. Want to hear that good news that you are doing well!!!
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Shall I panic yet? Tumor markers are up to 3.173.9 from the 2.635....and I wasn't even happy about the 2,635!! Bone scan is tomorrow and CAT on Monday,but let me tell you I am not thinking very positively about this drug right now....at least not in my case. I honestly don't know if should start looking for a new onco or not....this will be the 4th one to fail in a row and true shit happens, but jeeze, I don't feel like I should just go along with this, but don't know which way to go.
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Marybe, Something is not right. do you think your cancer status may of changed to negative since that is rare but wonder if that can happen. If you go from a negative to a postive, can the opposite happen for the cancer? Can your onc do a combo chemo and hormonal? I am not sure what you have had except I know Gemzar because you were so helpful to me when I started it. I am so sorry to hear about the tumor markers, have you done a 2nd or 3rd opinion? I would be panicking if mine were that high. Thinking of you and hope you get some answers very quickly. Cyber (((((HUGS))))) Dawn
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Marybe, I'm sorry your tumor markers are going in the wrong direction. I had the same thing happen with Halaven. Crossing fingers and toes that your scans disprove the rising TMs... Paula
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Some positive news for us today. I got back my scan and TM with all positive news. No progression and reduction of all lesions! CELEBRATION TIME!!! My TM is at a 25 with normal being under 30 and every lesion or area has regressed. The side effects are much easier and quality of life is much better. I am still bald but it is worth it with these results. I pray that you all will have the same. Hopefully this an carry us to NED and a cure or which ever may occur first.
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Bmagin......good for you! Heck yea it's time to celebrate!! Hoping you and NED hook up for a long lasting relationship. So happy for you.
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BMAGIN, CONGRATULATIONS!!! So happy you got good news. I am off for my bone scan injection now and am hoping against hope maybe my outrageous jump in numbers is just some wild fluke. It is amazing how we are all so different, but I am always happy to celebrate someone else's victory with them. Thanks for the good thoughts, Paula.....am glad you started this thead.
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Bmagin, that's so great! So happy the chemo's being good to you and NOT to your cancer cells. Marybe, have fun scanning (I know, not possible).... Fight, glad you got an answer to that nausea. You go, girls!
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Thanks for the support ladies! I hope this continues to work and does the same for you all. I actually got the go the beach the week of the fourth. I joked with my husband that maybe the salt water activated the sea sponge
I wish you all great results from the scan and hope that you have a short wait to avoid what I call SCANXIETY. Dr. Saw me in the hall b/4 he told me and sighed from being tired and I almost threw up. I was so anxious I took it as bad news. I joked with him that he needs a permanent grin to avoid it in the future. I can't imagine the stress of an Oncologist. He gave me a big hug and good news quickly and I almost moon walked over to get chemo. Good luck to all!0 -
Great news, BMAGIN!
Susan0 -
My onco is out of town and I could not get an appt til next Tues afternoon, but I do have my scan reports. The bone scan was OK....no new evidence of skeletal mets or increase, BUT the CAT which I picked up this afternoon shows that all my liver mets have increased in size. The largest which was 6.2X 5.9 cm in April is now 7.2 X 6.6 cm and the others are all larger also. Not good. I don't care if he says the CA 27.29 is not an accurate diagnostic tool, given the fact it was 3,173 and now the CT scan results showing the liver is worse, I would think I am not wrong is saying Halaven did not work for me. Oddly enough I was prepared so am not overly upset, but am anxious to look for something that will work for me. Since the last three chemos failed, I think we need to rebiopsy my tumor the way several have suggested....maybe my status has changed and we need to change strategies. At any rate I am having all my info sent to the onco I consult with at MDA and am going to ask him what he thinks. I have not been constipated for almost two weeks now, the hair loss pretty much stopped, so all of these lack of SEs even though that is not really something we can use as a tool, made me quite sure halaven had stopped working. Whatever my new treatment is, I hope it doesn't involve neulasta shots. I am really really hoping and praying it works for the rest of you....my onco was just so convinced this was the one and he's had great success with most of his other patients on it, it just didn't work for me. I really think 4 clycles was a fair trial and I hope he does also....he isn't going to like it that I feel the need to get another opinion, but I am.
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Marybe:
Sorry to hear this. Have you tried Xeloda?
Carol
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No, I have not tried Xeloda and it was the one I wanted to try before doing this one since the onco at MDA had recommended it, but my local onco who doesn't really like to work with other oncos it seems, said he wanted me to do Halaven, that he was using it and getting excellent results. This was the same thing he told me when he took me off arimidex and put me on aromasin and he sure was right there....the aromasin took my tumor markers down to 18 from the 700s and kept me in remission for years....but alas the hormonals all stopped working for me and I have not been very successful with chemo. The one that did work I quit after 22 treatments and that was abraxane with avastin and the SEs I had with that was bad, REALLY bad. I also had high hopes for this halaven after I met some younger woman in the treatment room who had started it in Jan with extensive liver mets and her scan in May came back showing the liver to be clean.....but it didn't do that for me. So maybe now he will want to try Xeloda....he was always saying he was worried about the hand foot syndrome with it becasue of my job, but heck, I am ready to quit. I have decided time to do things is more important than a pay check and I want to use my new passport so I am taking all my records and checking out SSDI on Monday. Even if he suggests Xeloda now, I still want to talk to someone else and am also going to see what the onco at MDA thinks.....I was really impressed with him. So we shall see. When I was asking about Xeloda he told me he was sure I would be doing it at one time or another just as he was sure I would be doing a lot of other chemos......and I was thinking hmmmm, am not sure I like the sounds of that, but realistically I know that it's going to be treatment the rest of my life......just wish we would get me on one that works!!
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I think a consult with your MDA onc is an excellent idea, Marybe. If it were me, I'd definitely push for the Xeloda. So many people have done well one it. Plus it's a pill you can take, and if you want to go on vacation there's no problem. I'm sorry to hear about the liver progression. I think Xeloda might just be the one to kick it back.
Peggy
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