Halaven - Day 1
Comments
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Tina I'm really hoping thats not the case. Also hoping that theres no brain mets. Please come back and let us know the results. I really dont have too many side effects but it seems that neuropathy is getting a little worse. Also day 3-4 I am so fatigued it feels as if I have the flu for a couple of days. I've been halaven since April/May of last year and I'm hoping it continues to work. If you feel up to it again please post and let us know how you are.
Elizabeth
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Hey gals! Checking in with my Halaven friends, even if it didn't work too long on me.... Glad most of you are doing well... I miss it; it was very 'do-able' and I felt good on it and except for some growing neuropathy, did well, until my cancer 'got smart' and started progressing again. Two and 1/2 months (3 cycles) sure didn't last long.
So now I'm on carboplatin and irinotecan (Camposar)... have only had one so far. Spent a week in the hospital because my port was abscessed, had to be removed, and a Picc line put in. (bummer, I like my port). Don't know if I can get another one in a few weeks or not. Also had massive sinus occlusion, infection, but was asymptomatic except for swelling in left eye, no taste, numbness.... no sinus headaches or pressure, weird (but, I am...LOL). So, had sinus surgery (roto-rooter, LOL) and am feeling better, IV antibiotics for abscess and sinus infection, and I am sure glad to be home.
I will continue to check on you all...... it seems like Halaven works great for some, not so for others; same as all the other chemo's. At least we have options...... !!! God bless and keep on loving the little sea sponges who gave their little lives for you....
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Can't decide whether to get a wig. Abraxane is 90% probability but halaven 40-45%. This is.silly but I hate to put the wig ladies to a lot of trouble le matching my huge skull and salt and pepper hair if.I'm not going to purchase.
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It's great to hear from so many. I agree eag, we need to keep in contact more. Ughh..Robin did the breathing test and although she is 100% O2..she is only using 60% of her lung capasity. Geeze, I have no idea what the doc is going to come back with. I stated earlier that the onc didn't think it was progression...but Lord I don't know. Why would she only be using 60% of her lung capasity? I'm scratching my head...I am so done with cancer
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Donese: Could just be that the toll of the cancers' ravashing our bodies has diminished her 'capability' to breath deeply. I know that my stamina/breathing/heartbeat, etc are all immensely decreased over this last year. I used to sing in a rock and roll band until last year, and now can barely hold a note for 20 seconds without running out of air. This disease devastates our muscles, and lord knows, our lungs and hearts are big muscles. That's why it's very important to excercise regularly, even if we don't feel like it. I've been off of my routine for awhile, but am starting back walking every day, and hope to get back to a mile in the next two weeks. Deep breathing excercises are good too... just don't hyperventilate! LOL
K-Lo.... I have three wigs... hate them; hot and itchy, even with caps underneath. I just go with scarves and caps, and sometimes I go 'nekked' with fake tatoos on my head for a good laugh in the chemo room. One of the male chemo patients who lost his hair thought that was a riot, and he was going to get some to put on too. I'd wait on the wigs... my hair both fell out AND grew on the halaven. I would have a brushfull in the morning, and then new tufts of baby hair on top later would show up. .
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I HATE WIGS..just had to get that out there lol...ladies today I was sittiing in my kitchen looking out at the sun...and I just wished for one day noone would be sick, that no one would die today because of cancer, that for just one day we would be free...not very realistic but that was my wish today. THen I read about Robin's lung capacity and Donese I just don't know...I do pretty well with my lung mets. I'm going to be moving this summer and hoping for a place with less stairs. I'm ok as long as I dont exert myself..is that when Robin has most problems are is it all the time???
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a friend gave me 2 doorags made out of hankerchiefs. if someone had a sewing machine or group ie girlscouts, church afterschool program they look like they would be easy to make. hankerchief equals inexpensive and fun. when my sewing class starts again i will share and see if they could construct a simple pattern. i am still waiting for the free beatiful scarf from gaielea. are we all voting for metavivor in the pinkwell.org campaign. hugs and smiles. penny
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Elizabeth and Karen-
It seems that when Robin just gets out of bed that she is coughing. She is up in the middle of the night coughing. Then she will have several hours of the day that she is fine and no coughing. I think Karen you are right. The cancers have done some damage and it is taking longer for her to recover. She had fluid on her lungs over the holidays and had a chest tube put in to help with the fluid. She had the tube removed about two weeks ago because she had no fluid in the left lung. She had a chest ex-ray when she had the tube out and it was clear. I am thinking it is inflimation but Lord, enough is enough. I soooo need a break....
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Coughing is a drag and it aggravates itself. I've had to consider every different additional cause from sinuses to GERD and treat all of them at the same time.
I HATE WIGS TOO. But I found out last time that I have to have one for certain situations. So this time I will buy one that actually fits my humongous head. Love those cotton bandannas.
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Good idea K-Lo!
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OMG....I am so flippin' frustrated I could scream. Robin's results from her breathing test are like I stated above. She is using 60% of her lung capasity. Onc states that it is probably due to the cancer in her lungs. (pout) But what makes me so frustrated is that Robin (an extremely intellegent woman) is so damn resistant to ANYTHING I say. It is like why do I even bother. Guys, I know it is you who has the cancer...I know that I have no real clue what it is like to have this aweful disease. But damnit I am not ignorant. I have medical training and she looks at me like I came from Mars. I tell her some things to check out and she states that I have no idea what the hell I am talking about and then she talks to the onc's nurse or PA and I be damned if they tell her the same flippin shit I just did. ARG! I feel helpless and hopeless. I feel ignored. I feel depressed and really angry. I just have no idea what to do with my anger or frustration...
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knit, journal, take up target practice, laugh club in your area? i only wish my spouse cared and was involved like you are. ask robin if she only wants you to wear your spouse hat when you go to appts with her and leave the medical part of you in the parking garage. but ask if it is okay with her if you talk to her medical team outside of her appt day/time
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Donese: Agree with Penny.... back off a little, but let her know that you are in this together, all the way, and you want to do for her what she needs. I think we all go through a little 'pushing away' phase during some of this.... we really feel guilty/bad about involving our loved ones in this to the same degree that we are; and sometimes we do feel like we are being smothered; but it's inevitable and we have to "let go" and learn to let people love us, take care of us, and suffer a lot of the same pain we are going through. Cancer is our learning experience; but it is our caretakers'/families learning experiences too.
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Penny & Karen-
I know you both are right. I know this to be true in my head, but when it gets to my heart it is hard to divorce one from the other.
Karen, I will back off and Penny I will find something to do ... I sort of like your idea of a target practice. I had a friend one time tell me to get all my old dishes out and take them to the backyard and smash them all against the fence ... I laughed at her and said she was crazy, but I'm thinkin I might do it.
Thanks for your suppport
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Donese..you are so supportive and I know you want to do all that you can. Do you still do at least some of the things you liked to do before? Take care of yourself also. I bet as a caregiver its hard to antcipate what she needs and wants sometimes.
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eag-
I'm in grad school and there has been very little time for any leisure activities. I am in my last year of grad school and this semester I will finish the last of the course work. Then in the summer and fall I will be doing internships. Finally in Dec I will graduate. Robin got sick in my second year of grad school, as did my daughter. The same year Robin was diagnosed with cancer my daughter, Kaylyn, was diagnosed with Crohn's disease. 2010 was not a good year!
For the most part, I am able to keep my head above water. The times I am under water I throw the life vest out and I see who will pick it up. The other day when I was ranting, I was throwing the life vest out to see who will pull me up. I am grateful you guys were able to pull me up.0 -
Hello ladies
I posted last week about my concerns regarding se's + profession on the halaven. Sadly my scans this week have confirmed my worst fears- the disease has run riot whilst on this chemo. I had only had 3 cycles but there has been significant progression everywhere+ I've also been dx with multiple brain mets this week too. I'm feeling low + frightened, mostly for my family if I'm honest. They are so scared + helpless. Thankfully my little boy hasn't a clue- he's only 2 and it devastates me that he's not going to understand at all when i disappear from his life
Im only 34 btw.
I'm having WBRT after being declined gamma knife due to there being too many micro mets scattered all over. I will be taking capecetabine too + I'm hopeful that will help as it is able to cross the BBB.
Just wanted to update, here's hoping you ladies have much much better results. Wishing you all well
love Tina x0 -
Tina its not fair, you are so young. Some women say their young children are what keeps them going but we really can't compare each case. I only hope your team, which sounds very sharp, can find the right brakes to apply to the "clones " (to avoid cursing.)
Please lean on us if it helps. Hugs, kathy0 -
Tina-
You are young, but you are strong. I understand your feelings of fear and dispare. This disease is cunning, baffling, and devistating. However, I do know about women you have been in your spot and their teams (very much like your onc team) have been able to slow and stop progression. Take one day at a time...prepare...and live
Much love,
Donese
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Tina: I am so sorry... Halaven only worked for 3 cycles on me too. It looked so promising. I too am running out of options. But, there is alwys HOPE, and I am praying for you very hard!!!
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Tina, you are much to young to have to deal with this. But as Donese says, you'll get through this and try the next chemo and hopefuly this one will be the one to stop the progression. Take one step at a time and enjoy every day you have with your beautiful baby!
Donese, hows Robin doing with the breathing?? I went to the mall today for the first time in I dont know when..I thought my breathing was ok...but walking to the store I needed, I got so winded. Scared me. I've been shopping but usually its at a store at a time and I'm just walking around taking my time. I dont know...do you guys think it could be I need to exercise more??? I wonder what it would be like to have my old life back...I know thats not realistic, but I hate this....I want to go to my nieces soccer game tomorrow. Now I have to worry about parking, how far do I have to walk....aaarrrrggghhhh!!!! I could just scream!
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Elizabeth,
Thanks for asking about Robin. She is better. She went to a pulmonologist yesterday and the doc thinks that Robin's breathing issues are both allergy and asthma induced. Robin had both really bad when she was a child and the pulmonologist feels that because Robin's compromised due to the chemo, her body can't fight the crud off. The doc gave Robin some inhalers and a nose spray to help with the breathing. Although she has only been on the medication 24 hours, she is feeling some relief and does not feel as winded.
We are both happy that it is not the cancer settling in again. The Halaven so far is working and the lung mets are down. She has a MRI in April to see what the status is...we are both praying...I really think the Halaven is doing the trick.
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Yesterday was day one for me on Halaven and the meth steroid worked - I got no sleep last night! I did rearrange my bedroom furniture (in my mind as I have no strength to move furniture), read through most of the posts on here, worked some computer puzzles, cooked a rare breakfast, etc but no sleep. And I doubt onc will take me off it as I had a respiratory reaction to my first chemo, doxorubicin. I am ready to crash after I eat. I was nauseous after my treatment but eating helped that and I will try the ativan trick suggested here or pickle juice or back to soda crackers. Then last night I got really thirsty but that went right thru me as I am on dieuretics.
My conclusion from reading this site is if you aren't having SE, the drug isn't helping you. I am triple negative with Inflammatory Breast cancer which currently is active in my lung lymphs. My onc says his colleagues say they are having good luck with Halavan and TN but I don't see it on this board. I am really impressed with the attitude of the people on here, it is so upbeat which makes it a joy to read. Keep it up!
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So, am on 2nd cycle. Had my first round of this cycle last Thurs. Sooooo tired today! My pattern seems to be this: chemo Thurs, okay to work on Friday, very tired Sat. and Sun. then back to work on Monday. I get the flu like achy feelings on Monday and Tuesday (actually feel like someone has wrapped a large bandage around my chest and abdomen and squeezed it really tight) then start to feel better on Wed. and Thurs. back on it again. Anyone with lymphedema have a flare up while on Halaven? I seem to flare on the same days I have the flu like symptoms. Also, anyone have trouble staying asleep (I only get a steroid with tx)? Starting to lose hair like crazy on top...looks like I'll be buzzing it this weekend.
Overall, this is pretty doable...but I HATE the flu like symptoms the most! 0 -
Lori...thats exactly how I describe the way I feel. Its like I have the flu. You're just so tired it wears you out. Mine is on Thursday. Can't sleep on Thursday and Friday because of the steroids, then Saturday and Sunday, feeling as if I have the flu and on Monday, I begin to feel better.Hope it works for you!
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Hi all, For me it was touchy day one and then just the steroids. I did have a bad headache the first day and am wondering if it was administered too fast. I didn't really have a bad day just felt like I was in a zone, but did have paind rotating around my body. I imagined that was the 'pacmans' hunting down the cancer cells. My question here is how often do you see your onc? My first treatment was 3/2/12 and I am not scheduled to see onc until 3/23/12. Between then I will have blood work done and the infusion center will determine if I get a shot. Is this standard?
Hoping you all are finding this to be the cure you need!
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This day 1 day 8 thing had me quite confused. Instead of getting 2 weeks off just one. Seems many of us had first dose this week.
No steroid here. Nausea was moderate today. I dint know if its too soon to be halaven or if it's still the rads.
How long how long how long.......0 -
Sorry menan, I didn't answer.... onc plans to.see me.in 4 weeks so no.big difference there. The educator told.me.to.expect joint soreness in about 3 days. Were you surprised how fast they infused it?
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Menan, No SEs does not mean it isn't working or so my onco tells me, but that has been the case with me. Remember, with all chemo the SEs are cumulative. However I have found I do not ever have normal SEs.....now I am experiencing the funky nails on Adriamycin that I got with Abraxane and supposedly that does not happen with the Adriamycin so go figure....even onco said it was not a usual SE. Everyone is so different. When I did Halaven, I was fine Wed. afternoon,(would get it Wed. AM) Thurs and until about 1 on Friday....then I would go to bed and sleep for a day. I was never sure if this was the chemo itself or the steroids wearing off. What really hit me hard while on it was the neulasta shots I would get.....those really made me feel like I had the flu....aches, elevated temp, chills. However, taking the claritin helped....took it before injection and after and maybe it was partly mental, but it did help a lot.
I hope halaven works for all of you and I know it has for many. My onco still thinks it is a greart drug, it just did not work for me. Yes, Kathy, it does seem to be a pretty fast infusion compared to some of the other chemos that take hours. I honestly do not recall my time schedule while on it, but think it was two on and one off and that he would call those three wks, one cycle. I wish you all the very best of results.
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Well day 2 after day 1 was tuff. Icky tummy and lots of fatigue. Took zofran but ativan helped more. Uh oh.
Anyway we just had pie w ice cream, so don't worry about me wasting away.
Anyone else getting hit in the abdomen?0
