Halaven - Day 1
Comments
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Jeanne, sorry for the wait for the scans. Hope it is great.
I know what you mean about falling apart. I, too, need to go get a new eye prescrip and I just got one about 9 months ago. Sorry to hear about the swallowing thing, that HAS to be very annoying.
Neupogen? I had it in 2004, so I don't have much memory of it. At least you just have to have three. I always had 6 or 7. Ouch, I just remember it being that thick stuff that hurts going in. Don't think I remember the bone pain being as bad as Neulasta, but I'm sorry you have to have it at all.
Paula
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Hi there,
Sounds like a lot of overall good results! This is encouraging! My hair fell out the 2nd week. Shaved it and now have fuzz coming in but not a lot of it. Still have the chin hairs and underarm hair. What's up with that???
I need to get Neulasta on the 9th day since WBC so low and don't want to mess with the Halaven schedule. Really felt weird on this one. Heard that Neupogen is much easier. Still have very low RBC and platelet levels so getting a platelet transfusion for sure this week and hoping it gives me more energy.
Speaking of energy, I had my first Reiki session yesterday with a very interesting Native American woman and I felt darn good yesterday! Went grocery shopping, did 3 loads of laundry, made dinner and went to the school to see one of my girl's art project. But today, pretty pooped again.
Annie
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Jeanne - I have Neulasta on Day 9. In the past, I've had Neupogen - only issue is on and after the 2nd shot, my big bones ached badly - the most I had was 3 shots. I hated Neupogen because I had to do the whole blood draw (CBC) before each shot (daily), but with Neulasta, I get the shot and not worry about it for 2 weeks.
Annie - hope your counts come back to a good level. I am starting RBC issues too, but have not been too bad yet. Platelet transfusion did not give me any energy in the past (I don't think it helps with energy), but blood transfusion did.
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Wonderful news, HopeToMakeIt!!!!!!
Susan J.
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bump
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It seems we're joining you guys. As I said in my new thread, Health Canada just approved us to get Halaven. It's encouraging to see many good results.
Paula, thanks for bumping this thread! I'm sorry it didn't work for you, though
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Re: Neupogen side effects: My mom does three days in a row about every month on weekly Taxol. Her side effects have just been a mild headache on the 2nd and 3rd night that goes away the 4th day, and a little achiness in her sternum.
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Dear Halavenites, I'm having my scan next Friday (before 3rd cycle) because of bad SE and I have a feeling Halaven is not my friend (palpable supraclavicular tumor is still there if not slightly bigger) and I have cough (could be SE). Onc wants to know my issues are SE or disease / treatment failing. Please keep me in your prayers. Last night I stayed up until 4 (despite pain killers - oxycotin?) with unbearable jaw, nose, neck, chest, side pains (like nails stuck) - treatment was Monday. We're confused about the cause of pain - in the past when I discussed this pain he said it must be SE but this SE is not listed for Halaven (but something about it affecting the mucous membrane is, so this may be related). Anybody else feeling such pain?
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Sorry you are in such pain. I have virtually no side effects. Mild nausea, major hair thinning and some fatigue and I wonder if it is working at all. I am used to thinking that bad SE = Chemo working.
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Thanks for rejoicing with us.. means a lot to us!! This is the first bit of encouraging news we have had since Stage 4 dx. Met with the onc yesterday, he was very happy, said we will continue with 3 more cycles and then repeat scans.. We are going to have to watch the neuropathy though, have started feeling numbness in my hands and feet.
@ hope4us - sorry u r in so much pain.. hopefully, it is the SEs, Halaven is so new, I guess they dont know all the side effects yet.. one example is, I lose my voice on the day of and the next day of treatment and it comes back after that... it took me while to figure it out that it is the Halaven since it is not listed as a possible SE. Wishing you luck for the scans....
@jeanne46 - Waiting can be really difficult...keeping my fingers crossed!!!
@ Paula - Love your posts and thank u for starting this thread.. has really helped me
@Yan - Hope Olga tolerates the WBR well and can start Halaven soon.. I have had tolerable SEs and recently got good scan results.. so am hoping that it will work wonders for her too
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Greetings Halavenites!
Looks like things are going pretty well for you guys - Paula, hope the T/C cocktail kicks some butt.
Steve - I wanted to comment on the pain that Nancy experienced...it is an odd thing - at my very last chemo (CMF) during my initial bout with the beast, I was getting the 'heavy hitter' - all the drugs in one cocktail like the first week of my treatment but this was the last one after 8 months. All of the sudden - the most excrutiating pain started in my lower back and wrapped around my hips to the front and would not stop...I wiggled and stood up and sat down and laid on the floor and bent myself over the chair - nothing would give any relief. Finally, I got a shot of Benedryl and things started to chill out - they have no idea what specifically caused it but it was a kidney thing - after the benedryl, they insisted I take an additional bag of fluids and gave me bottles of water as well and kept me there and on high watch. At the end, I was acutally laughing that after 8 months of the crap and no reactions - it had to happen at the very last treatment! Glad Nancy is doing better.
Hugs to all and I am sure not to wait so long to check in here again...I miss too much!
LowRider
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Hello All and Hope4us
Yes it's very frustrating and confusing as pain comes from all different avenues when dealing with cancer and SEs that occur during treatment. (Chemo SE's medication SEs.) As you stated you and your ONC is wondering what's causing your various ailments the cancer or the SEs. There are SEs even for pain killers. They stop the pain but some can be addictive and if taken too many, too little, too late, not on time, can cause serious pain and numerous other ailments. Should a person abruptly stop taking the pain meds they can experience withdrawals symptoms which brings on a host of other ailments and pain. .. I suspect neurapathy is a major cause of many of the pains cancer patients suffer rather than the cancer itself. Nancy has been dealing with Neuropathy pain and everything else that it causes for several years. It's a side effect from chemo Abraxane taken in 2006. It knocked the cancer into remission for one and a half years but reoccurred in 2008. The neuropathy was suppose to have lasted only six months but she still has it. Neuropathy affects sensory, peripheal, motor,and autotonic nerves within the body. .Read up on each nerve category and see how each one affects your body. Other diseases like diabetes can bring on neuropathy too. I suspect it may be the cause of your pain in your jaws and other places or your loss of voice from time to time. We're still trying to make heads or tails out of all of this learning as we go. I suggest gathering more information on Neurapathy and the SEs of it's meds Neurontin/gabapentin and discuss it with your ONC.......Higher doses of the meds may eliminate the need for pain meds.. I hope your scans will show great results!! Our prayers are with you. Keep the faith! If we knock out the disease, all the other SEs and ailments should disappear. God Bless, Nancy and Steve.
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Nancy and Steve, thank you so much for your advice. I will surely check up on Neuropathy - it is listed as SE for Halaven. My knowledge on that is currently zero - just assumed that is hand/foot nerve thing and had checked it off ... thanks!
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Hello Lowrider54 and All
Thank you for your commenting on that mysterious pain that seems be be the same one that Nancy had. She experienced that for the first time 21 Feb which was five days after taking her first dose of Halaven. She had had no reoccurence since then. You mentioned possible kidney problems. Her last scan 3 Feb 2011 revealed no cancer in her kidneys only in lungs and sternum and several other bones.. None in her lower back or spine. She has some lesions in the edges of both Iliac hip bones. That's the only parts close to the area she had her mysterious pain. Nancy is on a strict regimen of Neuropathy meds to be taken three times a day and if she forgets to take her meds or even late on taking them she will have pain and other ailments...She missed her evenng dose meds that night as we spent part of the evening visiting family. That may have been the cause of the mysterious pain. She's tried several times oover the years onher own to quit taking the meds to no avail. We will discuss this with her ONC and see what he says. She had her second treatment of Halaven with no reoccurence of that mysterious pain as of yet. She's now on her off week and will start her second full cycle this coming weds. She suffers normal SEs aches and pain, slight head ache from time to time , fatigue parts of the day but perks up afternoon and evening and has good appetitie. She went to the movies, did some shopping with our daughter from out of town. She baked a cherry pie yesterday. We had a good dinner and she enjoyed watching her favorite T.V. shows. The Survivors episode last night was a riot!! I'll let you know if I find out anything more about that mysterios pain. Thanks again, God Bless, Nancy and Steve.
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Hi everybody and Nancy and Steve, Glad the mysterious pain didn't show again and Nancy is doing well with SEs. I have to say my appetite has improved after I started the 2nd cycle although I am not my normal self. My energy has also GREATLY improved - I am now comfortable working 8 hours and going home to play and take care of our 2-year-old. The wierd and aweful jaw/nose/neck pain has not visited again after Wednesday night and I've slept well. My voice is still gone and has been gone since Day 1 Cycle 1. Wondering if it is neuropathy, if it would be a consistant pain. Anyhoo, I seem to be the one with most issues on Halaven and for anybody reading this, I don't want you to get wrong picture - we don't know yet if my issues are SE, common cold, or the disease - note for most Halaven has been gentle :=)
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Halaven hasn't been so friendly according to my recent scans. Some definite progression and new spots. I'll know more on Wednesday when I talk with my onc. Arghhh.
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Oh Jeanne, I'm so sorry to hear this. Just wanted to let you know I'm thinking of you and share with you your disappointment. We get our hopes up, go through all of these side effects, and then when a treatment doesn't work it just is so demoralizing.
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Jeanne, I had been anxiously waiting for your post and did not expect this! Crap! I share Annie's sentiments. :=(
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bump for nurse-ann
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Hello All
We had a little good news about halaven after first full 21 day cycle , however Nancy could not start the second full cyle this yesterday due to high fever 104 degrees. A CT scan revealed pleural effusion in lungs and or possible pneumonia infection.She's had pleural effusion over the past five years and had the fluid drained three times by thorandesis procedure basicly sticking a needle in her back and draw out bad fluids. Some times they could not get all of it out cause her blood pressure dropped too low. So she had to live with it as small amounts but it did not interfer with breathing that much. Right now she is in the hospital since teusday and is recoverying well from high fever and low blood pressure. Some good news from scan from first cyle of halaven treatment showed one lung cancer legion was reduced in size from previously in CT scan a month ago. ONC say it's a good sign and will continue halaven once she recovers from current problem. They will do thorasic surgery to drain fluid effution fluids and or pneumonia fluid today. It was postponed from yesterday. Maybe it is best cause she is stronger now with all the antibiotics and fluids given her over the past few days to fight infection. She is looking a lot better than the night we took her to ER that's for sure. They will make small incision at her side and by video camera laprascopic suction device to draw out all bad fluids . They say this is the reason for high fever 105 degree. Watch out for fever it is a side effect for cancer and or some of the SE for medication. If more than 100 degrees contact doctors to check for infection by blood test. She has had fever from time to time but we passed if off as normal side effect but this time it was 104 degrees. Always check temperature when fever occurs. We were told the surgery is routine and patients feel a lot better however, there is always danger of complications. She will be in ICU for a day or two and transfered to a regular hospital room for about 3 days. I see there has been some disappointing news for some about halaven. We're so sorry to hear that. Yesterday, the nurses gave a lot of good comments about halaven success amoung the patients being treated. ................ We are all in Gods hands! Keep the faith1 Jesus said many times "Thy faith hath made thee whole" That you may believe it , may the Lord cause a feeling of joy and peace throughout your body and spirit that it is true , even as you read this. Thank you all , till next Nancy and Steve
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Nancy and Steve, thanks for sharing the good news on the CT scan! that is great news! Hope she does well and returns back to Halaven soon. There is so much to watch - if it is not cancer, it is SE or something else! Nancy is in my thoughts and prayers for fast recovery and continued success on Halaven. I have my CT tomorrow and get the results Monday - I am not too anxious as almost know Halaven is not on my side (increased overall pain, increased size on my palpable lymph node) but I am ready to start to something new that works for me. Best wishes to all, Martha
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Hello All and Hope4us
Nancy is back home tonight no more high fever and feeling and looking alot better. Her surgery was done today and Surprisingly very little pleural effusion found and no infection of pneumoniia. The Thorastic surgeon said high fevers can becaused by many reasons even when cancer tumors start to die. WOW! that was good to hear!! Her ONC saw reduction of cancer in a lymp node so he wants to start the start the second 21 day halaven cycle this coming monday. Another reason for hope is they took samples of a large mass shown on CT scan on her left lung as most probably cancer however it could be just scar tissue. They will know once the samples are cultured which takes a couple of days. It will be great if it's just scar tissue instead of cancer. Now I need to read up on scar tissue and what that is all about. ............ Thank you for all your prayers. Steve and Nancy
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Glad to read Nancy is home and better!
Halavenites - sorry, but I am leaving this group as well. I have known it for a while but after 2 cycles scan shows progression, so I'm on to FAC. Wish me luck on that one and best wishes to you all remaining here!
Hugs,
Martha
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Martha, I'm so sorry. You know, I guess I was so naive thinking maybe this new chemo would do wonders for lots of us. But I guess there is no super chemo. Hoping FAC is YOUR super chemo.
To the rest of you, I hope Halaven kicks butt.
Hugs, Paula
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Hello All and Hope4Us
We're very sorry Halaven did not work for you. We know what it's like as Nancy has gone thru several types of chemos, plus hormonal, and radiation regimens. It's been 21 years at age 43 that the first event or breast cancer requiring a lumpectomy also involving several lymp nodes. Greatfully most of those years has been in two remissions 16 and 2 years. Keep trying, stay active, find things that make you want to live. That's what all those that surround you should help you with. Set up activities to look forward to with friends and family or community or church organizations. Nancy said she wants to be around to see our son and his wife have a baby. Right now they only have a dog (smile) ....Two years ago we toured New York for the first time and last year we toured Washington D.C on the 4th of July week for the first time. We live in California. That's a long way. The fireworks and all the places to see was fabulous!! We're going to Hawaii next month during spring break. We booked the trip several months ago prior to going on halaven. Nancy is really looking forward to it. Halaven may put a stop to that trip but we'll see what happens. So far Nancy is doing well as Halaven has reduced the size of cancer lesions in two limp nodes (From Feb and March scans {Paratracheal LN 2.2 cm X 1.5 cm reduced to 16 m and second limpnode Subcarinal LN was 3.6 cm X 2.5 cm reduced to 21 m) Theres lots more lesions or tiny nodules of cancer in her lungs and bones to erradicate. She starts her second 21 day cycle tommorrow as it was delayed a week due to high fever and pain several days in hospital. .They told us that fever is also a sign that cancer tumors are dying. She has slight fever everyday around 100 to 101 degrees. I'm taking it as a good sign. ........ Most importantly keep doing things or finding ways to lift others that may be suffering more than you are in the world. Major tragedys are happening around the world. Even if the only energy you have is to type and click a mouse you can reach millions of people and provide help from your experience and knowledge. Write a book, compose and sing songs make a CD, write poems, or share any other talent or resources you have that may lift others. It does'nt have to be about cancer just anything the world needs help on. The sick, the starving, the homeless, the lonely. I believe the blessings we seek can come when we become the instrument to bless the lives of others who are also in need and despair. The Lord will bless you! He not only said "Do unto others as you would have them do unto you" he also said as you do unto others, you do unto me" This blog set up by Paula PJB is great example. Paula is not on halaven anymore cause it did not work for her but, she is still here checking on us to give hope and encouragement. God bless Paula PJB and all of us! Nancy and Steve
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Hello, Halavanites! I got some great news yesterday. My tumor markers dropped another 200 points after the second cycle. They had shot up to 1000 (yikes) before starting and are now 400 after just two cycles. Hang in there everyone!
Jeanne, I am so sorry about the progression. May your next chemo combo kick butt!
Susan0 -
Yea Susan! Celebrate!
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Great news Susan!! I hope your TMs continue to drop and drop and drop. I'm sorry about my progression, too, but really happy about those for whom Halaven has had that magic touch!
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Hello Halavenites,
I'm back. I had my 14 whole brain radiation treatments. I got my first Halaven treatment last week then went to the Bahamas. I'm glad I didn't get sick on vacation. My WBC count was 1.89 when I got back. I got neupogen and then got the second shot of this round yestrday. I have to go get that darn Neulasta shot tomorrow. Should have gotten it today but I was working all day.
I think I may have posted this before. I spoke with the rep from the company that make Neulasta. She sent me a bunch of info about Neulasta studies. The studies about reducing the dose by 1/2 were not too promising. However one small study in which the patients received 4mg instead of 6mg had very good results. That is what I get, 4mg, and the side effects are much more mild, but the WBCs go way up for me. I may just respond extremely well to those meds. I have never had to have more than 1 Neupogen shot.
I have a nice example of what we may see coming out of Japan soon, radiation burns to my head. It hurts to waer my wig. I am using the creams form the radiation doctor and they help. But as one of my co-workiers put it this morning, I went all Muslim on him and wore a beautiful scarf as a turban.
To the new Halavenites, Welcome to the club.
May God Bless us all! I sending up a prayer for allof you.
Carol
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Paula,
How's the taxotere/carbo going for you?
I was just in the Bahamas at a botanical garden. The tour guide there pointed out the Yew tree from which the taxanes are produced. She was under the impression that the taxanes were only available in the Bahamas. I had to correct her. Taxol was the first chemo I took.
When she ran her hand through the leaved of the tree on the ground, I asked my husband if I could just pick up a bunch and eat 'em.
He didn't think that was such a good idea. Carol
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