Halaven - Day 1
Comments
-
thanks for the welcome. I didn’t sleep well last night though I was very tired. I kept waking up a million times.
I’m achey today and feel a slight sore throat just coming in. My mouth is dry. Not sure though if achiness is due to the Lupron or both that and chemo. I’m nit usually this achey.
It’s interesting reading back that some people have tumor markers raise and then they continue on and they seem to drop again. I do think sometimes I’m pulled off a drug to fast. I also read that it works better in people under 60, who knows the statistics on that really?
I’d be happy with stable for quite some time. This dang liver, nothing shrinks the Mets. I did try for a trial at mayo and they had a good one in mind for me, at the time, but too many liver mets.
Keep the good info coming,
Satah
0 -
Hi all! My cousins TM dropped almost half after 2 cycles Of Havalen! Her blood counts are still very low but dropping TM is the first good news we have Lately since the previous chemo combO didn’t work!
0 -
Satah, welcome to the day after 4:00am wake-up call! I've been taking 4mg of the 8mg of steroids they offer me. Thinking of going down to 2mg. It's to kepe the immediate nausea away.
But the next morning I'm wide awake at 4:00am. I've learned to just get out of bed and get some work done.
The aches are probably from Lupron and will go away in a couple of days. I get the minor sore throat and dry mouth. It goes away in a couple of days to be replaced (for me) by a runny nose.
Kidmanliang, that's great!
0 -
I get my steroids as a push with anti nausea meds. I hardly sleep that night and wired for half the next day!
0 -
hi all, hope everyone is doing well.
I do not get steroids with halaven but did with ac. I'm not normal bc they didn't keep me awake at all! Steroid really made me groggy feeling.
So i had first treatment tues of round one. First day I felt good. Second day, so so. Third day just blah. Nothing major. Fourth day, hello side effects! My back aches and had a slight burn. My feet burn like no other! I don't get this one. I had the issue with ac chemo but really no neuropathy with ac. It seems to go hand in hand with what I eat. If it has any slightly spiciness to it, these feet burn over night. Last night I wanted to go outside and stand on a cold sidewalk they were so bad. I bought l-glutamine powder and do feel that it must help. I drank a glass, ick, today. Tonight we had tacos and feet have a slight burn only. My back hurt yet today and my legs wereweek both days. Climbing steps or carrying something heavy kills my legs.
I do not Taste anything. I could sense spicy food or sour candy but without taste. This is a new one for me too. Does that seem to go away before next treatment? Does anyone know of anything to take to help taste buds?
If I sit around I'm ok. The longer I'm up doing things the more I ache. I'm not tired, no nausea, I have an appetite so glad for all of those.
It will be interesting to see what happens to my hair. Of course it's gone from ac chemo. I always had a real small fuzz the whole time but side never grew really. I had a two week break between chemos so started to really fill in. I had a dirty blonde color naturally and it is now black. My daughter gives me crap calling it unicorn hair bc I have a real thick dark patch that grows at the front of hairline. Gee thanks!
So I did start b6 and did take it with Xeloda and that and urea cream kept my feet pretty good. I do think, as said before here, keep up with l-glutamine. It just taste horrible in water!
Dose 2 on tues, it should be interesting!
Finally nice weather in Iowa! Going to the Amana colonies tomorrow for an awesome brunch buffet, that I prob can't taste. Taking my old Jeep Wrangler for our joy ride.
Happy Sunday all! Do something enjoyable today!
Sarah
0 -
Need ideas! I went today for my second dose of round one. My white baby cells were to low to get treatment. What concerns me though was that my baso number was high. I do think this is the first time for that. Has anyone else had that?
Thanks
Sara
0 -
Skitzblitz, what does L-Glutamine do ? I had some and was taking it for a while and felt good, but the treatment I was on then stopped working. I thought possible the L-Glutamine might have interfered with treatment so was not keen to do any more. It has been more than a year since then, I guess it was given to me to help feel better, by a naturapath type doctor, but I wasn't sure how compatible with chemo it really was. Any thing to share on this score ?
0 -
Amarantha,
I take l-glutamine to help with neuropathy. It’s an amino acid already in your body so I don’t think it will interfere with any of your treatments. Athletes use it for muscle recovery after workouts. I asked my doctor and he had no problem with it. Antioxidants he won’t allow me to take.
0 -
I also am taking l-glutamine for the neuropathy and I can’t seem to find anything bad about taking it online.
Sara
0 -
Actually, although its not essential for normal cells, breast cancer cells are particularly dependent on glutamine for growth and metastasis, especially TNBC and HER2-positive subtypes.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC58777...
To target this, there is a new clinical trial combining PARP inhibitors with glutaminase (to block the metabolism of glutamine) for a variety of solid tumors:
https://www.drugdevelopment-technology.com/news/ca...
of course, its not clear that taking extra makes any difference over the levels already in the body
0 -
cure-ious, so does this mean it's not good take? I am her2 negative. I wondered if the glutamine had anything to do with my sudden high baso blood work numbers so stopped it in case. I'll be checked again next Tuesday.
I'm nervous hoping it isn't leukemia from ac chemo. That can happen but very rare! Of course that would be just my luck.
Thanks
Sara
0 -
Skitzblitz, I don't know the details but have always heard glutamine promotes and shouldn't be taken as well.
0 -
grr, I read it can regenerate the liver but maybe what I was reading wasn’t a metastatic setting. Maybe that is why halaven hasn’t worked for some? 20.00 tub of powder down the drain. Sad thing, it isn’t the first money I wasted ☹️.
Thanks
Sarah
0 -
Sarah, I will continue to use the l-glutamine. Halaven is my 4th line since January of last year and nothing else has shrunk my tumor this much - in only 2 cycles no less - than this treatment. I started them both at the same time in February.
0 -
Sarah, was the absolute basophil number high? Or the % of white blood cells? If the latter, well, with the neutrophils low everything else would be a higher percentage.
But I get the feeling you mean the former. No idea what it means but a quick google search set off alarms. (I know, we should all stay away from Google).
Assume you're off drug for another week. With luck the counts will be back to normal by then. Try not to worry. I know that's hard but no one is going to do anything about this until they're sure it's not a transient SE of Halaven.
[I know zilch about glutamine. Not ignoring your discussion -- just don't have anything intelligent to add]
0 -
Sarah, does your insurance cover neulasta or something like it? I have Nivestym shots for three days following Halaven. It’s a CSF - colony stimulating factor. It’s keeping my numbers well within the normal range. Maybe you can ask your doctor if there’s something that would help
0 -
pajim- so I looked over bloodwork again. I had high baso% but then normal baso# but i see basost we're present in blood. I'm confused now more than I was, lol. I also looked back and my basos% was high when I was on ac chemo. Maybe I'm justnervous for nothing, I hope so.
Wandering- I have no idea why my dr does not like any of the white blood cell stimulation shots. He feels the body should do that on its own. My first week of ac chemo my white blood cell count went deathly low and he wouldn't give me shots. I sat in the hospital for a week waiting for numbers to come up. Finally a different doctor did give me shots bc he said I'd never get out of there if I didn't! I guess he prob has a good reason and should ask again why he is so against them.
Has anyone done halaven every other week? I'd like to stay full dose so maybe this would help my counts recover doing it that way?
Well, I'll find out tues why the mystery blood draw? I normally go to have PICC line flushed and bandage changed but they called and said they were adding a blood test, the doctor wants to check my numbers.
Have a good weekend
Sarah
0 -
Sarah, I hope you had a grand weekend. We went to the local bridge tournament and lost in the finals, grrrr.
Neutrophils normally take up 30%(??) of the white count. So if you're low on those, the percentage of everything else goes up. Anyway, if your white count normalizes hopefully the basophils will too.
But it does sound like you may need some white count support. Or a lower dose of this stuff. I had a horrible first cycle. So we lowered the dose deom 1.4 mg/m2 to 1.1 mg/m2. I can tell you the SEs are much easier and it seems to work just as well. At any rate my TMs are still falling. So you could try that.
My MO said people do all sorts of regimens. He does have someone doing every other week. I did that last month because I was on vacation for a week. I have to say, it was pretty good. I need an extra week off in June because of a brutal schedule -- MO says we can be as flexible as we like. So you shouldn't feel locked in to a dose or a regimen (unless you're on a clinical trial).
0 -
so my blood test today! It was to just check if my numbers were still going lower in case I would need a blood transfusion. So I freaked out for nothing but I’m sure it won’t be the last time I get myself all worked up!
My whites did drop some more. I felt a little tired but I was busy last week at work. We shopped all day Saturday out of town. I have been up late the last few nights. I just chocked it all up to that. My red counts are all going up, slowly! They told me with all the ac Chemo I had it is normal.
The plan then is for next tues to get chemo again, full dose and then neulesta the day after. Of course my white count has to get back high enough to do this.
It is so sad that I’m hoping to get chemo next week.
Cancer life, Bleck!
Sarah
0 -
Our lives are a it warped, aren't they? So glad they'll give the Neulasta. I, having refused the white count support last Day 1, got a mouth full of sores last week. Luckily they were under my tongue and didn't hurt, but I'm kicking myself in several places.
Next time I show up and the ANC is low, ask for and take the GCSF, grrr. Though mostly likely I'll show up on Wednesday (Day 1 of cycle 6) and everything will be normal again.
0 -
Take the shot! Take the shot! As much as I hate the way they make me feel I’m glad I don’t miss any treatments. My absolute neutrophils last week were 4.8 and WBC was 7.1but my tumor markers were up after being down last month. 😕 I hope it doesn’t mean another progression for me. I’m frustrated that treatments don’t work for long.
0 -
Libby, Grump on the TMs. I hope it's just a blip.
I've always continued treatment with rising TMs until the scans get much worse. We live with a little worse so that I don't go through treatments too fast. But I recognize that I'm a little odd and my MO puts up with me. Actually he has always agreed, so far. Until the day he panicked last summer but that's a story for another day.
0 -
Hello to everyone here. I am my sister's care giver and she has started Halaven. 2 weeks on, then 1 week off. She was on Xeloda prior for a unbelievable, wonderful 6 years. She has liver and bone mets, stage 4. She has had a few side effects from Halaven. A little bloating, headache, maybe from the steroids, but constipation is a concern. Maybe a different diet?
Thanks so much.
Mark J.0 -
Hi, Mark,
Congrats to your sister for a great 6-year run! How wonderful you’ve been her caregiver
A diet with plenty of fiber is helpful as well as lots of water. With summer coming a lot of in-season fruits and veggies will be easy to find and they are easier to eat when they taste good. Miralax is a stool softener, not a stimulant laxative and can be used often. Activity is also helpful.
Good luck!
0 -
Pajim, I agree with the logic of continuing the same treatment on rising TMs, as long as they don’t get doubled. My cousin and her MO disagreed so that she changed medications very quickly, and now she almost finished all good options. Sigh, for this disease, it’s difficult to tell what’s right/wrong as there’s are so many unknowns.
0 -
I will get more blood test results this week. On my order from the doctor they weren’t supposed to do a full panel last week only CBC so everything will be done again today. I’m looking forward to seeing if there is another spike - or drop - in tumor markers. I may even have the results before I see my MO on Thursday.
0 -
hi All! This is it, I’m getting halaven tomorrow weather they like it or not. Hahaha, I’m a big talker! I really hope I am able to get chemo tomorrow and I have no problem with the shot the following day. I’m not for sure which med it is but I always have the shot in my stomach and never have any issues from it. I’m sure it’s one of the Neulesta generics though.
Boy I hope I didn’t just jinx myself!
Praying for u wandering, I’ve read others on this thread had numbers go up but scans were fine. It happened to more than one person.
Sara
0 -
yeah yeah yeah! I got chemo today! I have my bloodwork done where I have chemo and I heard the doctor talking to the nurse and he said “ her numbers are still low” I thought they were for sure talking about me bc there wasn’t anyone else there. I was bummed. But it wasn’t me!
So I was off ac chemo two weeks, had one dose of halaven and off two more weeks. All my liver bloodwork was down some. Then came my tumor markers, they were down one number. I was shocked bc with all the time off and one dose I really expected them to be up some more. I’ll take the good news for once!
I did find out why I seemed to be getting halaven different than mostly everyone. Most say they get a push. Mine is added to some saline and then given al mixed. Still short, maybe ten minutes.
Feeling good so far. Sucky neulesta tomorrow. I learned today that it stays in your system ten days and will take me through the day 8 infusion. It will hopefully keep my whites up enough. I’m not sure what I was actually getting with ac but know i wasn’t approved for neulesta. I’m fearing the bone pain now with this.
We shall see how this week goes. I’ll keep you updated!
Sarah
0 -
Congratulations Mark and Sarah!
Sarah, I hope this cycle goes well. You could try taking benadryl or claritin or something along those lines to help with the Neulasta. Not sure it would help but the theory is sound. If not, just think of the drug making little white blood cells to help you get more chemo. I don't remember Neulasta causing me any problems 10 years ago but I haven't had it lately.
Wanderingneedle, what's the story on the TMs? Any better?
I went in today for the start of cycle six. Everything normal (except for the liver function tests but those haven't ever been normal). Let hope the cycle goes as normal too.
0 -
Pajim, I’ll get the results in the morning - they’ll be online then. Today I turned 57 and had such a busy day I’m so glad it’s my off week! I was determined to have no appointments today!
Sarah, I get nivestym shots for 3 days after chemo and they make my bones hurt but it means your body is making lots of white blood cells! They gave me hydrocodone but during the day I take ibuprofen and power through it with the grandkids here and sleep with the hydrocodone. The second week is worse than the first. After a few treatments you’ll get the feel of what causes which side effect and can treat them effectively.
0
