Halaven - Day 1
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Elenas I'm sorry I don't have anything hopeful you tell you. Skin mets are hard to get rid of, they will remove the breast if you claim great pain,
myOnc says it's cause there are so few veins in the chest, YES get a second opinon because you don't want it to start spreading, to other parts of your body, mine is in my spine, my breast, and a few nodules in =my lungs, About your breast, my onc said if there's no bleeding or weeping to keep it uncovered exposed to air. If bleeding or weeping than coved it with a dry gauge so it does not get infected.
I sure wish you the best of luck, and we'll stay in touch, and if I hear of anything useful I'll pass it along.
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Lynn, I'm so grateful for my new schedule. it's made life much more bearable. My last infusion was Thurs. and so far I feel pretty normal. I have chemo brain and spend alot of time doing nothing but staring at the tv. For last several years I've had a beautiful flower and veggie garden. Now I can't even go out there, my brain won't shut down about all the improvements I'm going to do. when the reality is i'm not going to do any of it. I can't take the sun. I'm also an oil/canvas painter. But I can't do it now. Just getting out the supplies starts the tears rolling. You can't be depressed and creative at the same time.
Sorry I'm grouchy today, The most unfair thing happened to my dau-in-law and its affecting my mood.
My last blood work was real good too. My hemoglobin back in high 11's on A/A it had dropped down to 9. White blood cell count ok too.
My Onc said something that made my day. " There you are standing looking good at 4 years out, despite The fact that none of your treatments have only worked for 3 mos, he said you have a slow growing cancer. " That sounded good.
Hope you r week continues to go well.
HUGS and prayers, LYNN
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Haven't heard from you Lynn, are you ok? or just taking a break?
Haven't been on Havalen long enough to have scans. But I must say most days except for weakness /fatigue I feel ok.
To those who have been questioning, I have not lost my hair. In first month it fell out heavily in my comb for about three days, then it quit. Since my hair was quit thick if I style it right you'd never know
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I am sorry that I haven't checked in lately. This past week I have had SEs galore - fatigue, weakness, nausea, diarrhea, lack of appetite, shortness of breath on exertion, and two days of chills (no fever). (I am sure my MO will be upset that I didn’t call about the chills, but it was the weekend.) I feel pretty good today. It is all so unpredictable.
I am glad that you are feeling better, but I know that the fatigue and weakness can be overwhelming.
I am bald bald bald. Oh well. It took about a week to fall out, it I was finding hair all over my house, the car, my clothes, just everywhere. When it reached the point that there more bald areas than hair I shave offthe few strands left.
I have an appointment with my MO on Tuesday, so we will discuss options then
How is your home health aide working out. Does she do cleaning or help you with other things?
I hope you find some energy.
Hugs and prayers from Lynne
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Lynn, So glad you checked in, These SE's Never know from one cycle ( or day) to the next how your gonna feel. I have some SOB too. Some of my problem are the people around me. "Sit down, don't do that, here I'll do that for you etc" I've got to move-- my bones needs it, and my muscles need it. I know they are trying to help me BUT.
My three boys and I are suppose to have a meeting to decide where I'm going to be living. They don't want me living alone. Sure I get lonely and depressed but I'm not near bad enough for a nursing home and I can't afford assisted living. So, I don't know what they are going to come up with. Wish they'd think about my emotional health, if they only knew how much a phone call, or a text would cheer me up.
Anyhow enough of that, yes, Home Care will drive you to dr apts, grocery store, sit and chat if you just want company. I just got a new lady, she's my age. she's a Christian, she's funny. Our personalities meld fantastic. If I could just drive again, a nice ride in the county along the river listening to some christian music, oh gosh, that lifts my mood. My kids don't want me to drive so I'm not since it makes them so nervous. But being a shut in is awful.
I'm sure glad to hear from you, but gotta run (run, ha) and get ready for a ONC apt. Besides Havelin it's my month for the bone drip. I'll let you know how apt went. Hope your SE's have settled down
Love and prayers,
Sue
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Day 1. I had my first infusion today. I wasn't sure if I was going to get it because I had elevated AST and ALT. But they gave it to me and so far no issues. Food smells were a little annoying at dinner but I still had an appetite. The Dr said if I get nausea it will be on day 2 or 3. Is this correct?
Thanks
Julie
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Welcome Julie, this thread isn't too populated but we'll answer any questions that you have. I've never had nausea on Havalin nor the big "D" so don't know the answers to those two. What I remember the most is extreme fatique the first first two weeks where I layed on couch all day and slept. Then that eased up. Although, I'm still tired nothing like those first few weeks. I've been on Havalin since Mid March and although my hair is thinning there's plenty left. Watch your appetite I've been losing way too much weight. The longer I'm on it, the easier it's getting. NOW if it's just working! First scans scheduled for end of June.
Lynn, ONC appt went well. My boys don't want me living alone so they are trying to find a place to put me! Told my ONC this and she said if you want to live alone I have nothing to say against it. (YES) I said well, I said I'd never ask but told them I would, what is my prognoses? She said it's "guarded" right now. She said if we can get rid of the cancer on my chest I'd be in good shape for awhile. So it all depends on that. She said you're not near sick enough to be talking about nursing homes, assisted living, etc. She said someday we'll be having that conversation, but not now. Gosh that was such a relief. I've been doing this almost 4 yrs Lynn, with no surgery, rads or any other of that beginning stuff. She said half your TX's haven't worked yet look at you. You're doing good! So I walked out of that office with my chest puffed up a bit. ( it's ok, I confessed) Tried to tell people Jesus is walking me through it but most of them don't have the faith you need to believe that. Thank God I do.
You have a nice week-end
All my prayers for you
Sue
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Snooky
Here is to year 5🥂!
Julie
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Well, I'll find out friday if Havelin is working for me. I have high hopes but don't know why because none of the other TX have worked for more than 3 mos. Please say ssome prayers for me
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Snooky, I have said a prayer for you and will continue to keep you in my prayers. I hope that Halaven is working for you and continues to do so for a long time.
I started cycle three last week and feel good. I will have round two on Thursday. I had SEs after that round during my last cycle. I felt very tired and weak, had two days of chills, no appetite. Luckily, I felt really good during my week off. My counts were good last week including my liver enzymes which are now in the normal range. My potassium was low, but that seems to be an ongoing issue with me and Halaven. My tumor markers, CA27.29, are down 150 points. It is still well above the normal range, but it is headed in the right direction. I am scheduled to have scans on June 17, so I will find out if this treatment is working then.
Snooky, I will be thinking of you on Friday. Do you know when you will have the results?
Hugs and prayers from, Lynne
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Snooky,
Crossing my fingers for good results!
Lynne
I am having the same issue with potassium and also magnesium. I am trying to get them back up this week so I don't have to do a transfusion on Friday.
They may also lower my dose if wbc is low again. They almost didn't give me treatment last week. Has anyone had their dose lowered?
Julie
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Julie, I think that Snooky had a dose reduction when her schedule was changed to every other week. She will probably comment on that whe she checks in.
I had my treatment today. My blood work was pretty good other than my hemoglobin which drops a little each time and the potassium that dropped again. I am taking potassium pills again. Oh well.
Snooky, I will be thinking about you tomorrow (Friday) as you get your latest results. I am still praying for you. Let us know what you learn.
Hugs and prayers from, Lynne
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morning girls, just checking in before my Ct and bone scan this afternoon. I've had so many of them but today has me on edge. Don't know if I can lay completely still for bone scan, Woke up with nasty bad dry cough and the cancer on my skin is itching like crazy. drinking water like crazy for the cough, We'll see how it goes.
No Lynn, I never had a dose reduction, Just switched to every other week which has made an enormous difference. Well, need to drink a cup of coffee and chill.
My next apt is the 15th but my results will come thru my portal before then.
I so hope Havelen is working because after the first two injections, i't easy, easy, easy.
I thank both of you for the prayers, it means so much.
Be in touch as soon as I have any info. (Lynn, my Hemoglobin is going down too, my Onc Said they don't worry until it gets to 8)
Have great days girls,
Saying prayers for both of you.
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Well, my scans are over and now the waiting begins. I wasn't sure that I could do the the bone scan. My back hurts so much on my right side (this is new) that laying on it without moving seemed inconceivable. I can't even do it on my bed, much less a hard steel table. I told the Tech my issue. Told her I didn't think I could do it but that I'd like to try. So, as much as it hurt, I forced myself to stay focused and made it through, so glad that I could make it. Haven't had bone scan in close to 6 mos.
Hope you two are doing ok and can manage to enjoy the lovely week-end. Lynn hope those new SE's went away for you. Getting up to 90 today so no outside fun for me!
Blessings
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Hi All. I feel I should be a good news story in our chat. I started at 2.6/mg in February. My tumor markers were 3600. It is now June and my tumor markers are down to 112. That is a 98% reduction. I had to do a week off and a dose reduction due to neuropathy, but CLEARLY Halaven is working... and dramatically well too.
I still am having a heart rate increase about 48 hours after and I get all sorts of weepy during the 48-96 hours after, meaning I start crying about 48 hours after the injection and I stop about 96 hours after the injection. My fingers are tingly. But in general I am fine.
@Snooky1954, thanks for the meds/counseling suggestion. Because the effects are so clearly about 48 hours of weird despair, I would rather tough it out than add more medications to my cocktail. Ben&Jerry's plus Netflix is a fine way to get through. Kind of reminds me of PMS from the younger years. It is just so clear cut. I start crying 48 hours after my infusion and it goes away about two days later. Because this weird side affect stops so abruptly, I just wait it out.
Hugs to all.
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Snooky
Thinking of you and your scans. Hoping your back is feeling better!
Julie
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Hi Julie, my scans didn't go well. Progression. Can't seem to find a TX that works for me.
My ONC apt is the 15th and I'll see where we go from here. Wishing you the best of luck on Havalen.
God Bless
Sue
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Snooky
I am sorry to hear that. I am in the same boat. Taxol is the only one that worked for me and only for three months. I talked to my MO when I started halavan about going to trodelvy next because it's supposedly works for people who have progressed on other chemo. So I think that will be my next treatment. I hope your MO has some good options for you.
Julie
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Sorry to read your news. Oddly, I was reading about trodelvy . It does sound like a wonder drug. I, also will be talking to my Onc about it. Taxal is the only drug that worked for me also, I was on it for about 6 mos. no real side effects except for the neuraphty in my left leg. Dr was afraid it would be permanent so he stopped it.
Perhaps we'll meet again on the trodelvy thread.
Hey Lynn, are you doing ok? Thinking of you
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Snooky: I'm sorry to hear about your scan results and hope your back is feeling better. I hope when you meet with your doctor it goes well. I'm having trouble with progression. Tumor markers are really on the rise and my doctor wants to try Verzenio even though I failed Ibrance after two years. Insurance said they wouldn't cover it but she got the drug company to provide it free. I'm not too confident that it's going to slow this down. My main issue now is with the tumor breaking through the skin on my right breast and I'm so afraid of how bad it will get. It seems like I remember you saying you had some issues with a fungating tumor. Did you say Halaven helped? If Verzenio doesnt do anything, she has mentioned moving me on Halaven. I was wondering how worked with your skin issues? anything suggestions you have would be helpful. I even spoke to someone from the University of Minnesota and they say surgery is not an option. So frustrating.
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Elenas can they do radiation or sbrt to the breast? That is so frustrating that they won't remove it.
I'm hoping Verzenio works for you. I was on it for 6 months and didn't have any issues.
Wishing you the best!
Julie
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Snooky, Bummer! I am sorry to hear that you have progression. It will be interesting to see what your MO recommends next. Has she looked into clinical trials?
I will have scans next Thursday to see if Halaven is working. I, too, am running out of options. I think I might have one more chemo to try. I went to Dana Farber, but I don’t qualify for trials.
Elenas, I hope you find a treatment that works for you. From what I have read, Verzenio works differently than Ibrance. Verzenio is often prescribed when Ibrance fails. Some people do very well on it.
I hope we all find the treatment that works for us.
Hugs and prayers from, lynne
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elenas
So sorry to say that nothing helped to close it. I had a course of a strong antibotic which cleared all the "junk" out of it. And it finally crusted over. For three years it just sat there on my breast, none of my treatments clearing it up. About 6mos ago, while on A/A the cancer started spreading on my breast. Now it's on my chest and down one side. Really fast growing. Dr. hoped Havelin would knock it back but, it did not.
Another gal on here had the same issue and she had radiation on hers and if I remember right, she got rid of it. I don't know why but skin mets are hard to manage. So, do whatever is possible not to let it get started. (strong chemo) They wouldn't let me have my breast taken off either.
Sorry I don't have good news for you.
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Lynn, I have the mutation for piquay (sp) so I think that will be my next stop. After that I just don't know, I don't want to jump from TX to TX. My nerves just can't handle it. I would like to find something to clear out the mets on my skin, they itch, burn, and a I can't sleep on my right side anymore. And are making my life miserable. My kids are older (i'm 67) and I just can't find a reason to keep fighting. But I do want the skin mets gone. I believe LoriCA had hers radiated, So, I might check into that.
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Lynne
Wondering how your scans went?
Julie
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Julie,
Thank you for asking. I had scans on Thursday morning, and the results were posted to the patient portal at 3:30 Thursday afternoon. The turnaround time was a nice surprise. The scans showed that everything is stable. That is good for me, so I am pleased. I will see my MO tomorrow and have my next infusion.
How are you doing? Have you had any bad side effects? Are your blood counts hold up?
Hugs and prayers from, Lynne
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Lynne
I am so happy for you. So far I'm doing OK. I question whether or not halaven is working. When I was on taxol I knew it was working my tumor counts went way down. Not getting the same from halaven. My worst side effect is tiredness and stomach issues. I have a hard time eating. Smells really effect me. Potassium and Magnesium are always low. So far I have been able to get all my infusions but it has been close. This week will be week 2 of cycle 2. So we will see.
Sounds like you are going to have a good appointment!
Julie
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Julie,
My tumor markers went down at first, but they were up 6 points last week. Six points mean nothing, so it seems that they have leveled off rather than continuing to decrease. My potassium has been low since I started Halaven. I take potassium pills daily to keep the count up. I find that fatigue is a problem for me, too, although I think it is getting better. I do not suffer from nausea, but my appetite is not good. Some foods taste “off” to me. I do enjoy my week off because I have more energy.
I hope that this treatment is working for you. Do you know when you will have scans?
Lynne
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Lynne
I won't get scans until around August 5th. It's usually 3 months after I start a new treatment. Hoping tumor markers are down this week. I did just find out that I have an ear infection. So maybe they did go down but couldn't tell because of the infection? Hoping that was the case.
Julie
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Well, it has been a rough few days. I have had 4 days of nausea, vomiting, achy joints, and fatigue. I woke up this morning feeling great, then I was hit with diarrhea. Hopefully, that will resolve itself quickly. I am glad this is my break week.
My appointment last week was uneventful
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