Halaven - Day 1
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pajim - it is so nice to hear from you . I am glad you are on to the next steps of weight bearing but I bet it still hurts like crazy. I wish those cancer bugger would just leave us all alone but you're right, eventually they'll track us down. I continue to hope the best for your recovery.
Donnabelle - it is also nice to catch up. I'm so g!ad the 1st y90 is done. And hopefully another month off is possible your body has been through so much.
Jaylea - has your treatment schedule started up again yet, I just can't remember.
Its amazing how many people are moving on from havalen since I started a short time ago.
I am currently typing from the hospital bed I've been in for 2 days. We don't know yet of an infection, still waiting for some cultures. My experience seems to follow along the lines of Donnabelle. I still hope to give it one more cycle.
We are a small group getting smaller. I we all are very hopeful.
Arolsson, GG27
Thoughts and prayers to us all
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Kayla, nooo! Crap, I'm so sorry to hear you've landed in the hospital. I hope you've got a private room, decent food, and all the care you need to recover and get the heck out of there.
Yes, I'm back on treatment, just finished 8th Cycle and am on my week off. The month long break did help resolve much of my neuropathy and I'm feeling stronger going in to this go-round. I even retained some appetite and put on another pounds this cycle, which is unheard of. My MO said an occasional extra week off doesn't hurt anything, so maybe after a couple of more cycles I'll do just that.
Sending hugs to all ~ JL
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just a quick update, my cultures look negative and the end of the 48 hours that usually shows growth of bacteria is at 4:00 today. The lab and doctor are playing it safe and waiting until 4 before I'm released from the hospital. This experience reminds me of Shetland's mysterious infections as well as Donnabelle's low blood counts, mine went below critical neutiphil levels...could this all be Halaven or just coincidence, hmm. I'll read back on the thread and maybe this is an expected side effect. I am on my week off anyways, so maybe this won't effect or delay my next dose or treatment.
Jaylea - I am hoping I'll get 8 cycles in. I still have not had problems with neuropathy and I'm sorry you struggle with it. I did experience it in 2013/14 with paclitacel and was on pain meds for years with neuropathic pain afterwards. I still struggle with being over weight, being on dex did not help that issue but hopefully you can gain some weight as I swear it helps, especially after this hospital stay. My doctors have said an extra week off is nothing to worry about but I always get freaked out about delays. I just want to find a chemo that doesn't show progression in 3 cycles.
As always, thinking of the Halaven gang. Best wishes to all.
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Kayla, I so sorry you're in the hospital. Hoping you are home by now. . . Shetland, hoping you're not also still in the hospital.
As for me, after nine months on Halaven and a two month break we are calling it quits. I saw my MO this morning. He doesn't want to give cytotoxic chemo at this time for fear it will interfere in my recovery. Since that's my worry too we are on the same page. He says we should worry more about how I am in April versus how I am in December.
I'm glad he thinks we can think long term (ish). Anyway, I am going to try Pigray when I get back from Thanksgiving. Surprise, surprise my TMs haven't risen that much. On the other hand the cancer in my femurs was taken out, lowering the tumor burden. I have scans on Friday for 'baseline', and start Faslodex on Monday. Third time on that drug LOL.
In other news, I have put away the walker. Taking training walks with no cane and they are going well. I have hopes of dumping the cane in a couple of weeks. Whee! Still having trouble with discomfort and sitting and which pain meds to take to counteract it, but everything (including my attitude) is getting better. I have a trip to San Francisco scheduled for the week after Thanksgiving. Planning to go and take my cane. My MO raised his eyebrows and said "of course you are"[going somewhere and I can't stop you]. No moss grows on me.
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I just wanted to pop in and say hello. The Halaven ranks have trimmed down, but hopefully everyone is doing well. I see Shetland has moved on to Doxil. Pajim, wishing you the best of luck on Piqray. It's supposed to be rainy next week so do bring your cane just in case. But glad you're walking without it. Kayla, hope things have settled down and that you're home and comfortable.
For the first time on this tx, when I went for my Saturday labs before Monday chemo, my ANC dropped to no-go status (.7). I redid labs Monday morning and it jumped up to 1.3, so I didn't have to delay. And this was after my week break. It's frustrating because I've actually been feeling good, energy and appetite up. So we'll see what next week brings.
Wishing my American friends a happy Thanksgiving!
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Jaylea - it does look like we have dwindled to just a few. Oh no I hope you don’t have struggle with blood counts. It’ is so frustrating when treatment is delayed and especially if dose reduced. My blood dropped too,last week, I do my bloodwork tomorrow, it will be interesting to see how it is. I know many of us have moved to other treatments, and they’ll continue to be in my thoughts and prayers.
Pajim - thank you for stopping by to say goodbye. We just might end up on the same treatment again sometime. Good luck.
Thoughts and prayers to all..,
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hi all,
had my first infusion of Halaven yesterday, it went well, the nurses were great. today I had some nausea, enough to take ondanzitron. i don't like the se's of the drug to take away the se's of the chemo. but willing to put up with it if it stops these liver mets in their tracks. i go for labs on friday, fingers crossed that my labs will be ok. my onc said i was the only patient she had who had febrile neutropenia on ibrance, i don't need to up the ante on that!
pajim, i do hope that alpelisib is kind to you. good luck.
kayla, sorry to read that you were in hospital, it's not a good place to be when our counts are down. anytime I have to go to emerg, i get freaked out by all the sick people there, coughing & hacking with no thought to putting on a mask etc.
i go back and read but can't figure out who is still here, jaylea, kayla, am i confused that there are just the 3 of us??
cheers, dee
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Sorry for missing you all these past few weeks. Lots going on, not related to my chemo. I'm still doing quite well. Only had two bouts of SE - vomiting for half a day and diahrrea another day two weeks later. Otherwise, my energy and most of my blood levels are good. My calcium has dropped very low, something that is concerning my physican husband, but don't really know what to do about it.
I'm sorry for those who are suffering and spending time in hospital.
We are bracing for our first major winter storm - 8 to 12 inches of snow, but fortunately don't have far to travel for Thanksgiving on Thursday.
My best wishes for improvements in your handling of Halaven. Welcome too to the newbies.
Amy
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Amy, we've got storm activity out west, too, but nothing I'm sure compared to what you're dealing with. After 6 months of bone dry weather we're finally getting rain in the Bay Area and snow in the Sierras. Glad to hear your SE's are minimal and that you're tolerating the tx well.
Dee, I probably mentioned this already, but I take an 8mg Zofran at home right before I go for the infusion. If I don't take it, they will give it to me at the infusion clinic and it adds another half-hour to the treatment. It can be constipating, but otherwise does the trick. I also get a low-grade fever and headache around day 3, not every time, but Tylenol takes care of it.
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thanks for the tip Jaylea about zofran. I have had a headache since last night, finally took a tylenol today when it showed no signs of letting up. I have a bit of a sore throat & runny nose. I hope it's a SE & not getting sick.
happy thanksgiving to all who are celebrating, hoping the weather improves.
cheers, dee
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Hello everyone! Happy Thanksgiving!🦃
I’m still waiting for treatment. Issues with referrals and authorizations in the MO admin. Definitely frustrating. I’ve had nothing for 5 weeks and it feels weird. Maybe nothing next week unless they get it figured out. I’m PD-L1 positive so I’m hoping for approval for the Tecentriq. Not wild about abraxane since it only lasted 5 months for me before.
Kayla, are you enjoying being home?
Pajim, a nice break and some recovery time will be good as well as a trip to San Francisco. I hope the weather cooperates for you. Fingers crossed that piqray does it’s magic for you.
Jaylea, I hope your numbers continue to stay high enough for treatments and the weather isn’t too bad. We’ve just got lots and lots of rain.
Amy I hope you settle into your side effects and they stay manageable. The calcium is definitely worth looking into.
GG27, good luck on Halaven! The side effects can definitely be manageable and don’t last too long.
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GG27 - I hope you are doing well after your first week on Halaven. I'm sorry you had such a hard time with the nausea. It sounds like you were getting symptoms of a cold, did it turn into that? Have you had any more headaches since.
AmyQ - It makes me happy that your able to tolerate the SE, although I hope diarrhea and vomiting are SEs they don't repeat on the next infusion. I hope the storm wasn't too bad to travel. I hopeful you had a wonderful thanksgiving.
Jaylea - I am glad that we have someone like you to share your experiences with us. It is nice to know it’s normal and common.
Wandering - 5 weeks? You must be a very strong woman!
I am so glad to be home but I’m struggling with high high dose of pain medication, that have me in a spin, they have started weaning me down to a lower dose and of yesterday. Hopefully I will be back normal soon
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hi all!! hope everyone is doing ok with SE's and the nasty weather that's been out there.
kayla, the runny nose, sore throat & headache appear to be SE's for me. I don't have a cold but the slightly runny nose is continuing, the sore throat comes & goes as does the headache. maybe the weather or a combo of both. my body has a really hard time with new drugs. sorry you're having to deal with the pain meds and all that those entail.
wandering, i was about 6 weeks without nothing & it is very frustrating and scary. i hope they get this figured out soon.
amy, feel better soon.
i get my second round tomorrow. i want to ask if your counts drop significantly after the second round. there's a lunch that i would like to go to, but am scared to go as it's the saturday after my second round. because you get a week off, i worry that's because your body needs that extra time because it's so low. if so, i won't go. thanks all for any advice.
cheers to all, dee
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Dee, it's really hard to say where the labs will land. I find myself with more SE's after the 2nd treatment in a cycle, but the labs are a different story. Other than recently, they stayed pretty good (on the low end of what's considered normal but good for a chemo person.) Any ups and downs didn't seem to correlate to where I was in the cycle. Sometimes I would get low numbers coming off my week off. And some of my lowest were after my month break. I say as long as you feel good enough, go enjoy the lunch and don't worry about the labs.
You also reminded me about the sore throat. Mostly my throat is dry and occasionally scratchy, with nasal drip and clogged sinuses. But last month I had a full on sore throat that made me think I had a cold. That was a first.
Kayla, I'm taking it as a good sign that you're lowering your pain meds. May you continue on this positive trajectory.
Wandering, ugh, waiting for new treatment plan has got to be frustrating. I hope your body is rejoicing in the break while the cancer slumbers through it. Keep us posted where you land so we can keep tabs on your progress.
Sending everyone warm December wishes ~ JL
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Haven’t checked in here in awhile. Will prob be starting Halaven next month, after the holidays. Took a 3-month break (except for Herceptin/Perjeta for our son’s wedding. Will post more pics tomorrow along with a better update,
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Miriam - I don’t think met before. it’s so nice to meet you. What a beautiful couple. You must me so proud of him.
If it is your will, I hope your treatment resumes ASAP.
Thoughts and Prayers to all
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hi all!
got a call this morning to redo my labs as my ANC was in the tank on Friday, 05. today they doubled to the threshold of 1 to have my next infusion. i'm so nervous about febrile neutropenia again & ending up back in the hospital.
i'm done for cycle 1, fingers crossed that i can handle it & get rid of these pesky liver mets.
take care, cheers dee
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Hello, Halaven Friends. I just thought I would stop in and send lots of good wishes to you all. I'm sure I will see most of you on other threads, and if not I have marked you as friends so I can check up on you.
I only had three doses of Halaven because of my hospital adventures — five stays in as many months. I think three of those stays were for mystery fevers. It looks like there are three of us here suspecting Halaven fevers. Anyway, I had liver progression and a CT scan that suggested the possibility but not certainty of other even scarier mets, so I went to Doxil instead of going back on Halaven. I think it agrees with me much better than Halaven did. Somehow I feel that the hospital chapter is done now. I am left with maybe 3/4 of my hair.
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oh shetland, i am truly sorry for your news about progression. i hope doxil treats you well. i will follow your status as i feel if halaven doesn't work for me, thats my next step as well.
cheers, dee
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Dee, I mentioned that last week was my first low ANC at .07 with this treatment. Redid 2 days later and was at 1.3. I was so worried that this was the beginning of a trend where they would stay in the basement and I'd be on the merry-go-round of extra lab pokes and delayed doses. But this week, treatment 2 of cycle 8, ANC was 3.6. So take heart, it just might be your body adjusting to new tx.
Miriam, lovely photo, especially love that dress. I hope you do well on Halaven and look forward to positive posts.
Kayla, hope you continue to mend nicely.
Shetland, so very glad you're tolerating Doxil so nicely. Thanks for stopping by, I love seeing your name pop up!
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GG27 - when I was in the hospital my neutrophils dropped to .3, two days later, when released, went up to 1.2. For my Cycle 4 Day 1 they lower my dose because of it. I'm with you though nervous about dancing the low neutrophil dance.
- Hi Shetland - I'm so happy you stopped in. I am sorry for the progression of course but am hopeful that Doxil will be the “one". When I was in the hospital with my fever, you were the first one I thought of, mine was after Day 8 infusion, my Day 8 this time is on Thursday, fingers crossed. My MO has mentioned thatTaxol will be my next line of treatment. Wishing you nothing but NED, wouldn't that be great!
Jaylea - I hope all the fires in California are a distant memory now and rebuilding well on the way, I often pray for those poor people at this time of the year; I believe you mentioned the were a distance from the fires but I'm sure you feel the effects. As of Cycle 4 Day 1, I think I'm feeling possible neuropathy for the first time on Halaven.
Wandering - Any word on treatment starting up again?
Hello to the rest of the Halaven gang, hoping all is well
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How is everyone doing? I wish I was here to continue on the Halaven - I wanted side effects that I could plan around for the holidays. Today I start on the abraxane + tecentriq and I’m hoping for minimal side effects until after the holidays. I lost my hair on abraxane before so I’m sure it will come out again but I didn’t take good notes and I don’t remember how I felt except that it wasn’t good. My referral was reviewed by a medical director at my insurance and he approved the tecentriq. It took over two weeks to get it figured out.
Is everyone home and gearing up for the holidays? Nobody in the hospital or housebound against their will? I wish everyone a great holiday season with tolerable side effects and good weather and peaceful family togetherness. I’m moving over to the abraxane list and triple negative list and I’m sure I’ll “see” you all again on another list!
Libb
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Wandering, I hope abraxane and tecentriq is the perfect combination of fierce on cancer and gentle on SE's for you. I'll look for you on the other threads.
Dee, Miriam, GG, hope you're doing well. Kayla, yes, I'm about an hour from the NorCal fires. Now that it's raining the concern is flooding in the burn scar areas. I read somewhere that California has only 3 seasons: Drought, Fire, and Flood.
We're staying low key for the holidays this year. I don't have the energy to put up a tree (or, more accurately, to take it down), but I'll put up stockings and some decorations. I like to get the bough trimmings from a local tree farm (they give them away for free), clip and arrange them in a big florist standing vase, then decorate with white lights. It's an easy way to add light and scent to the home.
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wandering - I too hope that your new chemo protocol gives you a long and easy time. I'm sorry to hear you may lose your hair. Have a wonderful holiday with your family!
Jaylea - my husband is struggling to find the spirit of Christmas, I am hoping to find the spirit myself. Your ideas sound wonderful maybe I'll steal a couple.
I am still struggling with a lot of side effects but maybe my problems are medication interactions, I see a doctor of Wednesday. The more I think it might even a be an inner ear problem
Good night to all...
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Kayla, I hope you get answers from your doctors visit today. SE's can be so frustrating and suck the life out of life.
I've developed constant pain in my sternum. I reached out to Palliative doc for pain and MO for follow up. MO is out of town but the on-call scheduled scans for next week. I've got tramadol for pain. This is my first experience with it. It is supposed to be along the lines of codeine, but it seems more effective to me than codeine. I suspect the sternum pain is met-related, and if so hoping it can be radiated. Shoot, I was hoping for a nice quiet holiday!
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hello all!!
kayla, did you get any answers today at your appt?
Jaylea, I had a spot on my sternum radiated about 5 ½ years ago, it's been pain free ever since,(hope I didn't just jinx myself) hopefully you can get that done soon.
my hair starting falling out 2 days ago, it's very bad. I think I'm going to shave it off tomorrow before I head to my Dr's appt. so annoying, I was really hoping to keep it this time around, it had finally come back after thinning on Ibrance.
hope all are busy with holiday things!
cheers, dee
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Good Evening àll,
I know its late but I wanted to give an updated. I went to my regular monthly Doctor's appointment. Halaven was my 4th line of treatment and unfortunately I had major progression on Halaven; my largest tumour 10cm but the rest have grown exponentially to where more than 1/2the liver is cancer and now involving the peritoneum.
There are no more treatment options for me. No more treatment, I'm of course devastated. Palliative care wàs already in place for pain but now hospice has been applied through the palliative care team.
I know we didn't met all that long ago, but I feel kinship.
Good night my Halaven friends, good luck!
My real name is Maureen...Kayla was my dog...
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kayla/maureen, i sent you a PM. dee
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Kayla/MaureenI just read your post and it was particularly meaningful to me tonight. I've been in the hospital the past three nights as well as three nights last week and found out that one of the reasons for the problems I'm having currently are due to my gallbladder being blocked and infected. My G.I. doctor was going to talk to the surgeon about me, I thought tomorrow. I was surprised to see her at 8 o'clock tonight but the reason she stopped by was to tell me that surgery was not an option based on the where I am with my GI mets she said she understood that I was intending to try another round of chemo but I wanted to talk with me about hospice options with antibiotic treatment. She had already talked with my oncologist and the good thing is she had a really good bedside manner. My daughter (age 33) was with me at the time I felt kind of bad for her to have to hear it this way but she was very supportive of whatever I decide to do. And since he was glad that she got to hear directly from the doctor I'm going to try and rest and not think about it too much tonight but I know the prospect of GI mets responding to more chemo are not very good.
So my heart is with you this evening Maureen. It is such difficult news to hear. Take care.
Liwi
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liwi- I am thankful GG27 gave me the Courage to return to the thread. It will a difficult decision, as even though I didn’t make the decision for me, I believe you will be loved and supported. Please make your decision carefully. If you need anything just PM, it lets me release the emotions to share.
Dee - thank you. I needed your message
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