Halaven - Day 1
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Got my CT scan back. He called over the phone. Liver looks "good" after the resection, no evidence of cancer. However, my left illiac and L3 seemed to have progressed. I did not know I had L3 problems and the report does not say how much it has increased since the Oct '10 scan. They do use numeric measurements right? This is the liver surgeon telling me this and he said he doens't have experience with the bones (of course) I will talk to my onc on Friday but I am not sure what to do with this info. I am currently on Zometa for what I thought was just the left illiac and also Femara shots, Havelen 2.5 mg. So a mixed bag for me I guess I will find out Friday if I continue on Havelen or not.
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Patti - great news about the liver (that sounds like a dance with NED!) Not sure about the bone part. I've had scans that show bone involvement and scans that didn't. I imagine a bone scan would be more sensitive but I don't know. The one time a bunch of spinal mets showed up was on an MRI. No one seemed very worried. Do you have much pain in that area? I hope you can stay on the Halaven.
I do have some good news to share. My tumor markers went down again after the second cycle of Halaven (I just finished Day 8 of cycle 3 today). I'm due for scans next week. Always anxious when that time rolls around, but less so right now because of the TMs. I'm just hoping the tumor near my heart got properly zapped when I had radiation. The best news is that I don't have to have a Neulasta shot tomorrow. My counts were in normal range and the PA was willing to let me forego the shot. I will have bloodwork done next week, and if I need a booster then, I will get some Neupogen injections.
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Glad you do not have to get a Neulasta shot! Also great news on the tumor markers. The good news for me is that I have had no pain with the bone mets. I take Zumba classes 3xs a week, walk, bike and even tubing. So I wouldn't have known I had bone mets for the last two years if they wouldn't have told me.
You're right. My onc will probably order a bone scan. I'll find out Friday.
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Just an FYI, I do have very low platelet levels and Dr. is talking about a platelet transfusion next week. Anybody else having this done? Also anemic. Still have a lot of fatigue as well. Scheduled to have the Neulasta shot again next week which I'm dreading and shared about getting only half the dose. Thanks. My oncologist didn't look too receptive though to the idea but we'll see.
Annie
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Annie - just an FYI. I know we are all individual in our responses to stuff, etc. but after I had half a dose of Neulasta, my WBC and GRAN were still in normal range on Day 1 and today the GRAN (the number they look for - granuloctyes) was also in normal range - 3.2 (range is 2.0 - 7.8). I will have a blood test next week just to check, and get Neupogen injections if necessary. I'm sorry I don't know if the low platelets mix into decision making regarding the Neulasta dose. Maybe your oncologist would let you try it once to see how you do.
I think you'll have a lot more energy after the infusion. I'm also anemic and take iron pills twice a day. Am not as sluggish as I was a few months ago.
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I like all this good news here, girls! Keep it up.
Paula
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Hi everyone. I just got some great news. My tumor markers went down 400 points after one cycle! I am loving Halavan for now.
Susan J.0 -
hey ladies, thought i would give you some hope. i just finished my first cycle and went in to start my second yesterday. did blood work. my liver enzymes were down over 1/2! not sure all what that means but everyone was so excited. my liver pain is gone and blood work good. last month afer ixempra and before halaven, my liver was getting scary. now, it looks good. i will have two more cycles, a total of 4, then get scans. i havent had good news in so long so i am happy today!
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WooHoo,,,,,WooHoo.....WooHoo !!!!!!!!!
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Jenn!!!!!! What a wonderful news on a Friday!!! Awesome!!!!!! Just after 1 cycle!!!! Halaven is really your dear friend ...Hooray!
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And I didn't see all the good news above from Susan, Jeanne46, and Pattih (NED on liver) - yippie, yippie, yippie!
Annie - I have had both blood and platelet transfusion before. About platlet transfusion, it is quick and easy but they don't sustain you very long - you really have to produce your own to stay on treatments. Ever since I started taking Melatonin (supplement usually used as sleep aid) I have not had problems with platelets, and it is maybe something worth considering for you? From http://www.mayoclinic.com/health/melatonin/NS_patient-melatonin/DSECTION=evidence
"Increased platelet counts after melatonin use have been observed in patients with decreased platelets due to cancer therapies (several studies reported by the same author). Stimulation of platelet production (thrombopoeisis) has been suggested but not clearly demonstrated. Additional research is necessary in this area before a clear conclusion can be drawn."
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Annie - I really recommend Astragalus (I really think it helped my RBC and WBC) and Melatonin (I really think this helped my platelates). I have ALWAYS struggled with my CBC with every chemo regimin I've had (about 6 of them) and it is only now after I started taking these supplements that things looked good. Maybe it is worth a try for you.0
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Thank you all so much for your advice and so happy to hear of good results for others! Very, very encouraging! I already take Astragulus liquid and pill form and Melatonin 20 mg so I guess it might have been worse if not taking them!
Paula, hope things are going well for you if you're still checking in on this thread.
Annie
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Susan, Jenn - FANTASTIC news. Yes, I think Halaven is our new best friend! It's so nice to hear good news for once. I have scans next Monday, so am keeping fingers and toes crossed that the scans bear out the tumor marker results (they went down another 19%). Also hoping the Halaven is working for the rest of our Halavenite Club members!
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Hello Everyone!
It's great to see all these positive inputs about Halaven!! So far Nancy has had two treatments and doing fairly good however, on the fourth day after first Halaven treatment she suffered a most excruciating never before lower back spinal pain that radiated completely around her waist line and stomach area. It went away after taking pain meds. She does have some cancer lesions in both edges of her of her hip mastersized from her breast that may have caused it.. It might have been the pain that comes with neuropathy. No reoccurence for the past six days. Has anyone experienced this same type of pain? ........Surprisingly her appetite has been good! She weighs around 130 pounds. They give her anti nausea meds by tranfusion drip line just prior to her Halaven injection. By the way, Nancy had a transfusion port installed in her chest several years ago as they always had a hard time finding a vein.. If any of you are having that problem ask your doctor to install a port. .. .Sometimes doctors are so busy they forget about medical technology that really helps lesson the pain. I found out about ports on the internet and mentioned it to our ONC. He agreed, and had it arranged for Nancy.......... She had her second Halaven treatment this past wednesday and we were really glad her WBC was in a good range 4.5. Past two WBC were around from 1.8. Since second treatment she has had the normal SEs tired and fatigued but perks up towards afternoon and evenings. She deals mostly with neuropathy pain in her legs and muscle joints and everthing else that comes with it. .......... That's it for now,........... May God send the key to unlock the cure to this disease. Thank You, Nancy and Steve
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Steve & Nancy, I've always taken B6. That might help with her neurophy. When I have pain in my live, I just visualize it's the chemo eating the tumors away.
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Sorry. I can't type or spell. "chemo brain". I meant neuropathy and pain in my liver. Best of luck to you both.
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I was taking the Astragalus caps then switched this week to the liquid. Hope it really helps. I've also been on Melatonin 20mg for several years. I never had any issues with my wbc until halaven. My natropathioc doctor, (who is on staff at the hospital with my Onco) told me that seseme oil may help boost platlets by eating it, putting it on your skin, or bathing in it. I have done this before and my platlets never dropped into a critical range, so it might me worth a try as well. I buy a superfood from herbdoc.com that helps with energy. Lots of good vitamins, esp. B12. I have my day 8 treatment monday in cycle 2. I think I have scans after completion of cycle 3. Wishing everyone a great weekend.
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Janetwit
Thank you for the tip! We'll try some B6. Nancy and Steve
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my onc said the CT actually showed the effects of the Zometa on the bones not actual disease spread. I hope she is right. Anyway I had my 3rd round yesterday (six infusions total) and I am very nauseous today. Plus I have another crappy cold. Another weekend on the couch.
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Patti - that's GREAT news! Sorry about the nausea and the crappy cold. Maybe this is just a good weekend to stay tucked into bed or a soft blanket on the couch and watch TV or read. Do try to get some fluids down.
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Jenn -
I am very happy for you! T E R R I F I C news.
- Kim0 -
Kim - Thank you! I hope you are having a great week!
Ladies, whats the deal with everyone's hair? Mine was really growing back after Abraxane and during Icky Ixempra. Some people would probably not even wear any scarves or wigs with my head. But I am still wearing them. I noticed that after my 3rd treatment last Thursday, some strands were in my hands in the shower. Not big ones like on Abraxane. Did anyone lose their entire hair? or is it just strands. I was really hoping to have a cute pixie hair do soon!! Sick of the wigs.
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Wonderful news, Jenn and Patti! Patti, I hope you feel better soon. I actually feel much better this cycle than last. I also had a cold last cycle so I wonder if it intensifies things with the nausea. Jenn, I am losing my hair pretty consistently now. It's not coming out in clumps but when I run my fingers through it in the shower, there is a decent amount on my hands and in the drain. My hair started growing after about 4 cycles of Abraxane so I was hoping to have a pixie style too. Oh well...
Susan J.
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Jeanne - everything crossed for great scan results, please let as know as soon as you hear :=)
Patti - that is great and hopeful news from your onc! Awesome!
Jenn - My hair started coming off during the 2nd cycle - a lot is coming off each day in good amount (similar manner as Susan), so I think eventually it will all go bye-bye. But otherwise, the side effects have been better (less nausia, improved appetite, less fatigue and less overall pain).
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I feel almost guilty saying that I have not lost my hair after three cycles. After the first cycle it did start to fall out - lots of hair in sink, shower, pillowcase, etc. But then, it stopped. So my (now) curly short hair is starting to grow in slowly. Every once in a while my scalp gets sore and I start to worry that my hair will begin falling out again. But then the soreness goes away. Jenn, I didn't lost mine on Ixempra either (I also wasn't on it that long.....).
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Just wanted to share some good news.. I had my scans yesterday and looks like I have found the Regie boy
)... lung nodules shrinking, lymph nodes shrinking..... yipppeee!!!!! Got the results just now from the nurse and had to log in immediately to share the news with all you ladies. I will be meeting with my onc tomorrow, hopefully the plan will be to continue with Halaven. So here is hoping that all of us get good results!!!BTW, i did lose all my hair on Halaven, but who cares as long as it is working!!!!!
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Awesome news, HopeToMakeIt, Yai, yippie, yippie, yai!!!! Here is to continuing with Reggie until he transforms to Neddie :=)Jeanne- What guilt, enjoy your curlies! Any news yet about scans?
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HopeToMakeIt, That is FANTASTIC! Doing the happy dance for you, Paula
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No news about scans (probably won't know for a day or two more) - but went to local oncologist's office today for a CBC and results show I need neupogen injections (boo hiss). I'm going to get three in a row and then hope that does the trick. Have to go out of town on Thursday after the third shot. What SEs should I expect with neupogen? Anybody know?
I feel like my body is falling apart. This afternoon I saw a GI doc due to swallowing issues and now am scheduled for an endoscopy. My eyes won't stop watering, so next week I have an appt with an opthamologist. My eyesight has gotten much worse so I also have an appt. with an optometrist for a new scrip. I tire easily and am starting to huff and puff - but will just wait and see if the neupogen makes a difference. Next week it's back to Day 1 and TMs again. Keeping fingers crossed that Halaven will continue to be my friend. Ok. Done whining.
HopeToMakeIt - FANTASTIC NEWS. Dance away with Reggie Boy!!! ( That is, until Ned takes his place.) Wahoo!
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