Halaven - Day 1
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SyrMom -It does cause bone pain but the Claritin seems to help. I try to rest when I can but with 2 little ones and a full time job it can be difficult
The low counts and thinning hair are my only side effects so I cant complain too much!0 -
I hear you, loud & clear, grahaad1. I worked fulltime with a family my entire adult life, in addition to getting a few degrees along the way. I lead an extremely stressful lifestyle. Anyway, if there's anywhere you can cut out some stress, I'd advise it - anything that can free you up to enjoy your little ones and get some rest, is invaluable. Personally, I feel all the high stress hormones raging in my body for years, contributed to where I am today.
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Oh, &$%#, bone pain? Really? i think it was Taxol that gave me that. Did anyone have "growing pains" when they were young? That's what it felt like to me. Claritin? Will try it. Wonder what it is about Claritin that helps.
xoxoxooxo
Calico
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Calico- I started taking Claritin a few months back because the bone pain on the AA combo was becoming impossible and I am now on Faslodex with the same pain - the Claritin actually works - my PCP says it does fight inflammation somewhat and both she and my onc have been hearing from patients that it works so they are recommending it - I was told it wouldn't do any harm - I also take Tylenol Arthritis when things get really bad and the combo works - make sure you don't get Claritin D and I also was getting the drugstore brand and I didn't find it worked . Good luck.
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Thanks, 208Sandy, I will keep that stored away if I need it. Really cool idea!
xoxoxoxoox
Calico
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Well, what was I just saying about the bottom falling out! Yup, just found out I'm neutropenic for the first time!! Boy, did that come on fast! Was feeling great yesterday a.m. and slowly started developing a mild sore throat - by dinner time it was feeling like a boulder was in my throat & hurt to swallow & the inside of my mouth started getting patchy! Swished the living heck out of it with salt/baking soda/warm water combo, but just didn't feel right this a.m. - so went in to get checked out & wham, Neutropenic! As long as no fever or chills, no hospital - have to stop the ibuprofen for the back, though, cause it masks fever. Not panicking yet, next week is my week off.
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SyrMom--Sorry to hear about the neutropenia. I'm starting to have some issues with my white blood cell count and I'm hoping I don't have to postpone treatment next week. This is the first time I'm having this issue--never had it with other chemos. Anytime I have to deal with a new issue, it's scary. Hope you can avoid the hospital. Having your week off next week is good timing!
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Thanks, Gem. Yea, Halaven seems to have a reputation for this ... hopefully just a good a reputation for zapping the liver mets or whatever mets one is dealing with!! Obviously has some strength behind it!! My WBC were 5.1 on Monday b4 chemo & 1.2 today - WOW! I don't usually get up over 5 these days.
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Dumb question time, trying to figure this out ... I understand Halaven causes issues with neutropenia - a potentially serious/deadly side effect. I also understand with any chemo mouth sores can be an issue. However, the only time I've had major issues with mouth sores (like not being able to eat for 10 days) is when I had a toxic reaction to Doxil & now, with the Halaven, they developed within 4 hours (while neutropenic) - my whole mouth!! Major pain!! I have the magic mouth wash & all of that, but this is awful. So I'm wondering if it's the Halaven or the neutropenia causing it - cause if it's the Halaven, I'm thinking if it keeps reoccurring my dose will have to be reduced.
Anyone out there have this happen with Halaven or neutropenia?
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SyrMom - I haven't had a any issues with mouth sores. Hope your counts hold up for treatment! My onc thinks I'll be getting Neupogen from here on out to keep me on track.
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SyrMom--I also haven't had any issues with mouth sores (knock wood). I'm going in for my next infusion tomorrow and have my fingers crossed that my WBC is high enough to have the treatment. I did a quick look at the Halaven website to see if mouth sores were a side effect. They only had something ambiguous saying that "infections and infestations" of the GI tract were a less common side effect. I suspect that having very low white blood cells (i.e. the neutropenia) is the biggest culprit. I'm so sorry you're going through this. I have a long history of having trouble with canker sores and I know they're not fun but I've never had them throughout my whole mouth. I really feel for you and hope that things take a turn for the better soon!
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((((SyrMom))), I'm sorry, I'm no help here, either. I get my second treatment tomorrow and will ask the nurses about this. I'd ask the onc, too, but he sort of has to be hit over the head with a board before he'll admit to a chemo side effect.
xoxoxoxoxoxo
Calico
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Thanks ladies. I'll keep you posted ... this is a living hell with the mouth pain - ugh!! However, even with the neutropenia I'm not feeling all that bad. What's frustrating is I'm hungry and really can only get down liquids or very soft food - the pain is unbelievable!! Hopefully, as the week wears on this will heal.
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Hi, SyrMom, I saw this in rxlist.com. They are side effects (and there are many others) one is supposed to contact one's onc about:
"fever, chills, body aches, flu symptoms, sores in your mouth and throat;"
This probably isn't news to you, but I don't know when you are due to see your onc again, so thought I'd pass it along.
xoxoxoxoxox
Calico
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Thanks, Calico ... yup, that's why I ended up going in for a "sick" visit; saw PA & found out about the neutropenia. Hopefully this will be heal up, strengthen up week, on my week off!
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Hello ladies....I had my 3 round of Halaven today....was off for 8 days...and felt great...for once....in a long time...Yesterday April 1 was my 1 yr since being dx....Haven't had se that much...some shortness of breath...now on a inhaler...I get light headed...and feel tired...I live alone...so my mind gets paranoid because I don't know what to expect from this treatment....
My OC talked to me about Palliative care...Got me a little scared...which I am....***TEARS***
Just need some feed back on se halaven...and what you think of Palliative Care...
Carla
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Hi, ((((freebird Carla)))), I'm just a little ways behind you on this trail. I'll get my 3rd treatment in 11 days. I just read an article about the difference between palliative care and hospice care. I will see if I can find that. I'm sure I'm not far behind you in having this discussion with my onc, either.
I live with my husband, but still feel very much alone, like I can't relate to anyone in the world except those who are here. Yes, this is very hard to do.
xoxoxoxoxoxo
Calico
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I just had the first infusion of my 2nd cycle today. My biggest side effect has been fatigue right after and for a few days. I also have decreased appetite. My hair started thinning on the off week of the 1st cycle. It's not pouring off like w ACT but I'm getting good amount of shedding. I fortunately have thick hair but I am going for a wig consultation this week.
Has anyone used minoxidil or biotin to thickened hair back up?
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Oh yea, I was admitted to the hospital a few weeks ago for pneumonia and found out I have a few lung mets now. Been on oxygen but feeling better. Has anyone else weaned themselves off of O2? Did you see a pulmonary specialist?
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Hi DEbeachgirl! I haven't had any experience with lung mets but did want to comment on the thinning hair. I've been on Halaven for two months and although my hair is thinning I can still go out without a wig so I haven't shaved it all off just got it cut really short. Like you said, I get a good amount of shedding but it's not like it was with ACT. The nurse at my cancer center said she had someone on Halaven for almost a year and she never needed to wear a wig even though her hair kept thinning. I take biotin as part of my multi-vitamin and use shampoos with it but it's hard for me to tell if it makes a difference. I read on some other BCO thread that some oncologists don't want their patients using monoxidil. Not sure why but it might be a good thing to ask your doctor about first.
I recently went wig shopping and just wanted to recommend the Jon Renau O'Solite collection. When I had ACT and lost all my hair I bought a wig I loved but it was uncomfortable and I couldn't wait to get it off my head after about 2 hours. The Jon Renau O'Solite wig I got is super comfortable and I can wear it all day. It really changed my attitude knowing that I can look good and not worry about what my thinning hair is going to look like because I can always pop on the wig. I also tried on hairpieces and may consider one of those for the summer because with those you don't feel them at all. I hope you enjoy wig shopping. I found it a lot fun--sort of like trying on shoes. Other companies make lightweight wigs too--what you want is something called "capless construction". Sorry for the wig commercial but hope you find something you love.
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End of 2nd cycle. Next week is my off week. Get TMs done.
GemStateGirl - My hair is still falling out but has slowed down considerably. My main problem is that my part, I had really long hair that I cut shoulder length before this so I have a middle part, is thinned a lot and around the front of my head has some small bald patches. If I wear a wide headband or bandana you can't tell there is hair loss at all. I'm hoping that I can maintain this amount of hair as I've seen some people on this thread say they've had hair loss in the beginning and then it stopped and started growing back. I can deal with that. I'm not holding my breath though. I'm still getting a wig and I appreciate your suggestion. I need a wig for my part time job if I lose all of my hair. I DJ weddings.
As far as SE's this time; I haven't been getting the decodrone bc I had a bad reaction to it back when I was on Gemzar. I felt like I had 4 tequila shots for about 45 minutes. It was super scary. So they weren't suppose to give it to me. Well I wasn't paying attention Monday and she gave me the Dec. I didn't have any problem with it and I actually felt better then afterward then the last 3 infusions so we're thinking that the one that made me dizzy was given too fast. My appetite is still down but I haven't had the bad nausea w almost vomiting that I've been having off and on for the past 6 weeks. (knock on wood). I haven't had to have neupogen. Is that fairly normal?
I'm still on oxygen but I'm better every day and I can be off of it for short periods. I'm doing exercises with a Spirometer and have been improving with that each day.
One suggestion I have for the ladies with constipation; I have added a lot of veggies and black beans to my diet. I have a salad for dinner every night with snap peas, avocado, good dark leaf lettuce and spinach, tomatoes, carrots, peppers, etc. I also drink pure organic juices. I don't have a juicer so I get Bolthouse Farms juice smoothies. They are in the produce section. I love the berry, mango, and green juice (it's ugly but it tastes like fruit). They also have single size flavors that are yummy too. I try to drink at least one serving of them a day. If I do get constipated I use Benefiber chewables for a few days. They taste good and they work if you aren't too constipated. You can also just take them every day if you need to.
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Oh how I have missed so much....just myself got out of the hospital from a temp of 103.2 for 4 days...and met with OC today...and basically told he has heard of me wanted to stop the Halaven...well yes because of all the side effects...but told me...if I stopped chemo...it would take 6-8 mths and the cancer will have won...so I'm cont...the chemo...65% more chance to stay stable for a couple yrs.... and we are discussing how to help my "MIND" which is more of a SE to me since I live alone...and am doing this journey on my own...to stay in tune and in touch with the clinic...I freak myself out sometimes...but it just would be nice to have someone here with me to put my head on and be pampered....I have a great caretaker...but she leaves...and most of my thoughts happen in the evenings...Well just will have to get more strong will and tougher....and handle my thoughts better...and get distracted more...
I can't address everyone...to many of you beautiful woman to remember to address...but I am loving you and supporting the cause with my viral hugs...Love and Respect Carla
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Hi, Carla, I just sent you a private message with my phone number. I'm in CA so I think we're in the same time zone (Pacific Standard Time).
xooxoxoxoxo!!!
Calico
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CalicoCat and Freebird - I do hope you both get together and talk. I started Facebooking with a woman who has the same diagnosis as me and the same Onc. I at first was her 'counselor' as she is in her 30's with a young daughter and I'm in my 50's and also have had this a lot longer than her. But it's amazing how much she has helped me as she loves reading the clinical stuff much more than me, and has no problem telling me to 'knock it off' if I get gloomy!
I got my first dose of Halavan yesterday, it's funny how I sit around and 'wait' for a s/e to happen, I need to knock that off. The nurse told me to take a Zofran the night after the treatment, the next morning, and that night and I should be good after that...I'm hoping she is right!
On a side note, it's amazing how you just get this little dose, like 3 Tablespoons?? of this stuff, and it looks like water! You really are in the treatment chair for about 15 minutes!!
Laura
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Laura, check into the Zofran further - I was given a list of meds NOT to take while on Halaven & that's one of them! The list came from a NP, her source online was www.clinicalpharmacoloy-ip.com. I get Aloxi as a premed - works wonders, love the stuff. Lasts about 3 days & so far haven't needed any anti nausea meds.
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I get a premed infusion for nausea (Kytril) and, after 3 treatments, haven't had any nausea issues. It takes about 20 minutes for the Kytril, and about 15 for the Halaven, including flushing, so yes, it's great to have a short chemo for a change! But once a month I also get Aredia for bone strength, which takes about 2 hours.
xoxoxoxoxoox
Calico
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Hi SyrMom - I'm wondering if Zofran interacts with steroids instead of Aloxi as I am on steroids as a premed. I asked my Onc after reading your entry and he said Zofran was OK since I'm using steroids? I have to say that I did not have one stomach issue at all so I hope my Onc is right.
I got Halaven on Tuesday, Wednesday was great, Thursday I slept literally all day, yesterday I slept about 1/3 of the day and today I feel almost normal again. If it doesn't get any worse than this , then I'm OK with this stuff! As long as it's wiping those tumors out, of course. Pleasepleaseplease let this stuff work...
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benjnate--I too was very sleepy for the first three days after getting my initial Halaven infusions but I've been doing them for a little over two months now and that tiredness has all disappeared.
I remember asking my Onc about taking Zofran with Halaven because I get that just before my infusions and I had read on BCO that that was a "no no". I will have to ask again but I think she said it's only an issue if there are concerns about the heart. I go in for my next infusion on the 21st so I will ask then and report back.
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I also get Aloxi & steroids - but did on the other chemos as well, so not sure why Zofran is on the no no list for Halaven - but if your onc are o.k. with it, then you & he know your body best.
I have neutropenia again. Last time I came out of it well after my week off - week off again this week, but I seem to feel worse with it this time. There's been mention of the "shots" to stimulate the bone marrow; I understand they cause a lot of bone pain & Claritin is suppose to help. Anyone here getting them? I think he said neupogen instead of neulasta when you're on Halaven.
I've been on Halaven since Feb. It's known to be hard on the bone marrow.0 -
SyrMom--sorry you have neutropenia again. I hope you can come out of it on your own again. I've only had neulasta (when I initially did ACT) and although I did have pain for a few days after each shot, I was able to take care of it with Advil so I never tried the Claritin.
My main side effect with Halaven seems to be the lower leg swelling which I'm dealing with by taking a diuretic daily. I also just noticed that my arms seem to be falling asleep more often and I wonder if that's the beginning of an issue with neuropathy. I need to pay more attention to taking the L-Glutamine. And, of course, my hair continues to thin. Thankfully, I love the wig I got although I'm noticing I'm feeling hotter wearing it as the temperatures warm up.
These side effects aren't bad right now and I'm more than willing to put up with them since the Halaven definitely seems to be working for me. I continue to feel better (after a lot of back and hip pain in February and March) and my tumor markers continue to drop (first from 1071 to 416 and now down to 202).
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