Halaven - Day 1
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Thinking of all of you tonight. Phyllis, hope your day went well and that the next few days are okay for you. We all have stuff going on this week. I have treatment tomorrow and then again next Wednesday. Funny how we have different timing. I'm two on, two off and Suzanne is every other week, Maureen two on, one off. Phyllis, what is your schedule? I do get decadron but I've gotten to where I like it. I get a lot done around here when I'm on my decadron high! Maureen, good thoughts with you for tomorrow!!
My grandson texted me this morning that he was ready to get his hair cut today. He's been growing it for over a year to donate. We met at the hair salon this evening and he was so proud of himself and told them he was doing it for his grandma. I actually have the hair because he wants me to have a wig made for me. I'm hoping I can find someone to do that. If not, we'll donate it.
We do have some grandchildren between us, don't we? Lucky to be grandmas!
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I was almost finished with a long post when my niece called and when I came back it was gone. Too tired to recreate it now but will tomorrow.
Want to send warm thoughts and hugs to Maureen for good news from tomorrow's scan! Will keep you in my prayers.
Until I can make sense.
Phyllis
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Thanks for,the good wishes, test done now the wait for results.....
Glenna, love the pictures of your grandson- he looks so proud! (And handsome too! 😆)
I still have a teenager at home myself- two boys 16 and 18. The older one off to university and long spells between visits! Miss him, but happy for him getting on in life! The younger keeps us busy, always has!
Phyllis's, if I am leaving my page, I try to remember to copy it just in case- sometimes I actually remember and don't lose the writing!
Suzanne don't work too hard!
Feeling a bit of nausea now and have day 1 tomorrow. Wishing you all good things!
Maureen
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Ack! Sitting here waiting for my day 1 chemo approval and they say my liver enzymes are quite high (ALT and A LP). Of course I google it and one report says means cancer cells may be dying but another site says it may mean more cancer in the liver! Sigh, nothing is ever straight forward! Keep your prayers up its means they are dying and maybe when I get my scan results back......👍♥️
Hope everyone is doing great!
M
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Sending positive thoughts your way, Maureen. We all understand the anxiety but you are feeling it and I wish there was something to say or do to make it better. Hopefully your liver is having a funeral for dead liver cells. Hope your chemo goes well
Woke up yesterday with bad headache and chills but since our daughter had taken the day off and I know how much work sub plans are ( she teaches first grade) I got ready to wig shop. It was wet and cold which didn't help and by 1 o'clock, I had to go home. Slept three hours and woke up with a temp of 101.4. Off to the ER where they did a bunch of tests and sent me home. Have you ever felt as if the interest in what is wrong with you changes when they hear you have MBC.
Today I still have headache and slight fever - maybe it is a virus.
As I spend the day on the sofa, I will send warm thoughts to each of you
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I posted, or so I thought, yesterday after my chemo treatment. Went well. Had to wait a bit till they were sure I could have the treatment. My number of white cells were 1300. They found out 1000 or less and I could not do the chemo so I was good and had treatment. I feel for the others getting treated around me. They are always shocked how quick I am done. Takes longer to get the med from the pharmacy than it does to do the treatment.
Glenna, your grandson is so handsome. Bravo to him for sharing his hair. Hope you can find a wig maker in your area. It would be so nice for him to know grandma is wearing his hair.
Phyllis, I understand why they want us to go to ER, but seems we always get sent home. Seems a waste of money, but will do as they say. Hope you are doing better. Did you find a wig?
Maureen, prayers are going up for you and everyone else. I have faith that this treatment is going to work.
Getting sleepy. Will check back in tomorrow.
Praying,
Suzanne
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What a week for this gang! Sorry, Phyllis, for your hospital visit. Last time I went I said "never again". Hope you are feeling better today. Maureen, glad you were able to get your treatment. What did they decide about your liver counts. Mine are usually screwed up but my oncologist blames it on the chemo. I had my treatment on Wednesday along with the zometa infusion. Sleep cycles totally screwed up with decadron. I took it easy today, just because I could. Suzanne, I do love how fast this treatment is. Even with the zometa I was out pretty quickly.
Made a few calls today about having a wig made. May not be an easy thing to do. Sounds like one cutting won't be enough and I cannot ask him do it again. My husband said to go buy a wig that matches his hair! It was such a sweet thing for him to do, I hate for him to think I couldn't do it.
My younger son is getting out of rehab on Monday and moving into a halfway house. Hope and pray that goes well for him! It is a good location and close to lots of job possibilities.
Good weekends wishes for all! Glenna
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Gator gal,
When wig shopping the other day, most of the wigs used three different hair colors to create a blend. I wonder if they could add some other hair to mix with your grandson's. Not sure that's possible but an idea.
Hopefully the halfway house will be a perfect blend of care and understanding and accountability. Sending positive thoughts for strength and support.
Maureen. How did the treatment go? Any results?
Thought that fever broke last night but back today. Several mouth sores. Not sure how much longer I can or want to do this.
Phylli
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Phyllis, sorry you're having such a hard time. I was hoping this would be easy for you. Oh, how I hate mouth sores. I had a painful night Saturday but believe it was from the zometa infusion. Have been fine since then. They did tel me they could mix his hair with other hair but the cost is too much for me. I talked to a wig maker who suggested a halo .... A type of wig that you wear under a hat or scarf. Makes it look like you have hair. It doesn't take as much hair to make one and it is way less expensive. I think I am going to go that route. I took my son shopping at sam's club for food and then dropped him at the halfway house. He looks good and has a positive attitude. A friend picked him up and took him to a meeting tonight. Thanks for your good thoughts. I am really feeling good about this. He even wanted to go see his sister before we went. They don't always have a good relationship. A good sign, I think!
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Wonderful news about your son. Each day at a time and sometimes it is just a minute at a time.
The halo sounds like a very good option.
Chemo cancelled today, ANC 300 so labs next week but I do not want chemo as we hope to go to DC and at this time family is more important than chemo.
We started " the stop treatment talk" today. Dr going on vacation for two weeks so we will evaluate when she returns
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Hi my dear ladies,
It looks like my stay at the Halavin Hotel has come to an end. My last scan showed increases everywhere sadly. I had the flu ove the weekend and just starting to feel human again!
I knew something was up when my MOs office called Monday and said she would like to see me in her office on Wednesday (today). Originally she said she would call me with results....
I am getting into the "heavily treated" phase so my options are getting fewer. Please stay well and kick those cancer cells with this treatment! MO giving me the week off and will start something new next week.
I hope we can stay in touch and share successes. My best to you Suzanne, Phyliss and Glenna!
Hugs,
Maureen
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Drats, Drats, Drats! I sure didn't enjoy the posts tonight. Phyllis, sorry you couldn't get your treatment. I would delay until after your trip. Family is definitely more important! I hoping it was the fever that has you feeling so bad and once you're fully recovered you will feel better and delay that stop treatment talk. I do understand that day will come for each of us but just hoping to put it off.
Maureen, triple Drats again! I know we all were hoping for good scan results. I am also in that heavily treated phase but my doc keeps saying there's more we can try if I fail on halaven. Combination of flu and chemo must have been horrible for you. Did your doc all about options? Enjoy your week off and prepare for your next Poison!
Suzanne, hope all is well with you and your treatment last week didn't cause you too many problems.
I saw my doctor today. The results from the genome testing were not what I was hoping for. My cancer doesn't qualify for targeted therapy. The good news is we know we haven't missed anything treatment wise. My doc sent the results to the specialist I saw at Hopkins, to see if there is anything he is missing so we will wait to hear from her. I am also set for a cat scan when I get home from Florida to see how the halaven is doing. He said there are other options suggested by The Hopkins doctor when halaven starts to fail me. The testing was worth a try but I am definitely feeling disappointed. I'll put my Pollyanna outfit back on tomorrow! LOL!
On a nice note, My daughter brought granddaughter Delilah over this afternoon and I got to babysit for a few hours. It was lovely. It's hard to believe she will be two months on Friday. And I am still here and having time to get to know her!
I'm hoping to sleep in spite of decadron. Took my clonazepam so will give it a try!
Blessings, Glenna
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Ladies in Red!
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just a heads up. I'm leaving for Florida tomorrow and don't know how often I will be logging in. Wishing everyone here a happy Easter! Blessings, glenna
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So sorry Halaven did not work for you Maureen. They keep coming up with other treatments. Just wish it would not affect other parts of our bodies!
Phyllis, my Onc gave me Green Dragon for mouth sores. It has lidocaine in it. Sure does help.
Glenna your granddaughter is a beauty. Takes after Grendma! I hope some day to have a granddaughter. I have 2 grandsons that are my heart!
I have had a lousy two weeks. Don't know what I was thinking. I missed a bone scan last week. Thought my chemo treatment was at 10:30 last week and it was at 8:30. Thought I was to have a ct scan next week and no Indon't. Feel like I am losing my mind.
Goodnight ladies. Maureen, please do not stop posting here. Really want to keep up with your progress no matter what treatment you are on
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What beautiful ladies in red! That made me smile! Thanks! Have a great two week break!
Suzanne thanks for wanting to keep my here! I actually have no where else to go! No groups, maybe with triple negative, but other than the drug we don't have the same "disease"....
I have a palliative team appointment on the 28th, I guess I thought when I met them I would be winding down, but a feel as strong and fit as I did 2-3 years ago! My MO kept muttering that my scans don't match the person sitting in front of her- lot of good that does me now! I actually don't mind meeting the team, will be interesting to see what they have to say.
I spoke to another MO friend and she is surprised that my MO said she is running out of options, putting forward for phase 1/2 trials, etc. I will likely go for a second opinion and new MO when I have my figthtingweight back up- just a little fatigued and battered feeling right now I guess.
I emailed my old MO (who even up to Dec said we have lots of options....) to see wtf! 😬 Not sure if he will get involved, but we shall see.
Everyone keep putting one foot in front of the other (and in my case) regardless of what they tell ya!
Hugs,
Maureen
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Maureen, my Onc says the same thing about me. When I should be really down and she would think in pain I am not. The day my stomach hurt so bad and the top of my liver hurt really upset her. When I came back the next visit she could not believe I was laughing and feeling good. She calls me her star trial patient. It usually gets rid of the cancer fairly quick, but always comes back in about a 2'year cycle including the treatment time and always a different organ. Maybe it will run out of organs. I can tell her what it is though. God keeps answering mine and everyone's prayers that are praying for me. My DH keeps saying God has something I need to do, someone down the line that will need my help to get through their cancer and treatment. I hope he is right and that I will recognize it if it presents itself.
Please don't let anyone tell you there is nothing that can be done!!! There are so many trials out there. I get angry when I hear that someone is told there is nothing that can be done! I have a friend, co-worker had stage 4 breast cancer and was told there was nothing that could be done for her. They actually told her to get her stuff in order. She did not give up but made an appointment with MD Andseron in Galvaston. They put her on a trial and she is still doing well today! If she had listened to the other Onc and gave up, well I do not believe she would still be here today. So please don't let this get you down. We are our own protectors.
Phyllis, this is for you too. Please do not give up and live each day to the fullest! That is what I plan to do.
I try not to get preachy. Looks like I did tonight. I think I needed to write this as much as I wanted you to read it.
Praying for you all!
Suzanne
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Thanks Suzanne- not preachy at all! Much needed to hear! I am getting my mojo back! Had a good post chemo weekend (on Gem/cis for now). Not sure it's working, but the steroid high was pretty good! I missed it from taxol I guess! Lol
Have a great day and keep me in your prayers thanks you- I do believe that makes a huge difference! My prayers to all!
Maureen
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Dear friends,
I certainly don't want to be a quitter and we are looking at clinical trials. It is my body that is quitting, don't mean to be dramatic but when you look at side effects and at the bottom of the list are the very rare side effects, that's what I get.
Had to quit after one round of Afinitor, I did not have mouth sores but mouth craters. The breast cancer specialist had never seen such a reaction and insisted I stop. Next Xeloda, developed Acute subcutaneous lupus Erythematosis which can progress into full blown Lupus. On Gemzar, Hemolytic Uremic syndrome landed me in the hospital and off chemo for awhile. Anyhow, my body does not tolerate medicine well and all the side effects have taken quite a toll.
I had a low grade fever for 10 days after first dose of Halavan, still have mouth sores and yesterday my hair started coming out by the handfuls. If my ANC is over 1000, I am going to try a lower dose after we get back from DC.
Life is full of good things along with hard times and I want to keep going but I do need a reality check now and then. Suzanne, I appreciate your pep talk and will hang onto it when we face the decision to stop or continue the Halaven.
Lovely picture Glenna; grandchildren are all wonderful but holding a baby one is very special and comforting. Both ladies in the picture are beautiful. I love her chubby cheeks.
I have a goal to knit baby blankets and store them for when great grandchildren come. Have two scarves to finis first.
Maureen, I hope the Gem/cis is a keeper for you. I was able to take Gemzar longer than any other treatment. It is interesting to look at the list of drugs we each have been on and the order we received them. Maybe it is what's on the "blue light special" that month.
Once again, thank you for the support. It is so nice to have people to talk with who understand.
Hopefully I will be in DC Thursday to Sunda enjoying family and cherry blossoms
Phyllis
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Well hubby at it again. A Dr. Blaylock that DH listens to on YouTube stated that cancer loves acidity. So Ken ordered ph sticks and had me tinkle on one and found my ph to be very acidy. So now he has me drinking 8oz water with 1 1/2 teaspoon of baking soda morning and at night. I have to admit I am actually feeling better and not getting quite as short of breath. My ph is much better too. He said that when they had patients having a heart attack they would inject them with sodium bicarbonate. That was to bring down the acidity. Hmmmm. According to Dr. Blaylock if you get to 7.5 for a week then you lay off for a week. Then go back on. If over 60 not to take more than 2 teaspoons a day. Will let you know how this goes. At least DH feels like he is doing something.
Maureen, here is praying Gem/dis does great things for you!
Phyllis, no matter what you decide, you are not a quitter. We will all at one time probably have to face that decision. Even though we are so worried about the big C that we forget there are other things that could get us. None of us know when our time will come or how. I just pray when it is time, it will be easy. Am I getting morbid or what.
On a good note, April 22 my youngest daughter and my 2 grandsons are coming for a visit! So excited. Still want to try to go down to see them in about a week. I bought iPads for both boys and heavy duty covers for them. Can't wait to see their faces when they get them. Also bought them a solar ant and beetle. You put them in the sunlight and they scamper around like real bugs. They are about 2 1/2" long and 1" wide. Pretty cool.
Went to the dentist today. Nothing is ever normal with me anymore. He is referring me to a specialist to see why I have bone loss on my right lower jaw. There is no abcess tooth. But, the tooth has to come out. Too loose. Yea me!
Chemo this Thursday. Pray they get it on the first stick for me. So far they have.
Love you girls! Your becoming like family to me.
Suzanne
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good morning, all! This will be a quickie. Heading home today and will be back on a somewhat regular schedule. My grandson has had control of my iPad during most of the trip. He goes to sleep with it at night and wakes up with it in the morning. That is usually my routine. I've heard the acid stuff before but didn't realize it was as simple as drinking water with baking soda. I may try that myself! Where do you get the ph sticks, Suzanne? Phyllis, please don't think you are a quitter. There are times I wonder how long I can keep this up. I have days where I honestly wonder if it is worth it to keep on. It is a tiring endeavor,,just to do what needs to be done to stay alive. I miss my old self. I miss my old energy. You, and you alone, will know when you've had enough! Maureen, hope your new chemo works for you and se's are bearable.
Florida has been great and my grandson and I have had a wonderful time together. , but of course there's no place like home. I'll be glad to get there!
Much love,
Glenna
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We did make it to Washington DC and had a wonderful time visiting family and seeing the blossoms in their prime. Worth the fatigue!!
So today is chemo day, or not. Pretty much had decided that I could not do another Halaven treatment between the low counts, mouth sores, etc. MO saying your body can't take much more and then my tumor marker dropped from 1400 to 1200. We have talked about this over and over. Unfortunately, MO on vacation so will need to see Nurse Practitioner. At this moment I am thinking of trying a reduced dose but I have until 1:20 p.m. To change my mind numerous times.
Suzanne, I hope the tooth issue ends with removing the tooth. We all dread the possibility of ONJ so we will pray that it heals.
Glenna, glad you had a good time in Florida with grands. I can't think of two things I enjoy as much as being with grandchildren and listening to the waves in Florida.
Maureen, I hope the new treatment serves you well and is easily tolerated. I got nine months from Gemzar.
The sun is shining although it is cool but days like this make living even more desirable.
Phyllis
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Phyllis, beautiful photo of the cherry blossoms. Nice drop in tumor marker! Tough decision to make. I had a cat scan yesterday and going to see onc today for results. He wants to see how I am responding to the halaven. I think it has to be good because I have been so tired but we'll see. Glad to be home and in my own bed though the Florida trip was a lifetime memory for my grandson and that's what it's all about at this point!
I did see the wig people yesterday and they said my grandson had enough hair for a nice halo so I will be having one made. Should take 2-3 weeks. It will be exciting to wear it for him the first time!
Suzanne, let us know how the dental appointment goes. I am being switched from zometa to xgeva ?? B cause of the extreme bone pain. I worry about onj also. Yuck. All the stuff we have to worry about.
Maureen, I was on Gemzar, too, and found it very tolerable. I can't remember how long I was on it but was sad to come off. Hope you get a good long run.
Will be back later to report on the ct scan.
Blessings to you all,
Glenna
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Looks like I'm finished with halaven. I had a call from my oncologist tonight. After seeing me today and telling me my cat scan was stable, he reviewed it with the radiologist who convinced him that there was progression in the lung. Therefore, he is recommending I switch to a different treatment: Ibrance combined with fulvestrant. He will speak with the specialist I saw last fall at Johns Hopkins to confirm this as a possibility for me and call me on Monday. Peripheral neuropathy and low blood counts are major side effects but he feels I will continue to handle those well. He said I have super nerves!
Ibrance has direct activity on the cancer and also works to make the fulvestrant work better. He said he will probably start me on a slightly lower dose because of all my bone marrow has been hit with over the years.
He had already decided to give me an extra week off because of my fatigue, so I won't have treatment until the 13th. I am glad for the mini break.
Of course I will be checking in here to see how my buddies are doing! I was hoping for a long run! Drats!
Glenna
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Phyliss, I saw a few scenes on TV of the cherry blossoms last and thought of you! Beautiful picture! I hope whatever you decided to do went well. I wish you lots of peace of mind. I do realize now that Halaven was tougher on me that I thought- now that I am off it. But if it did the job, I guess I may have felt differently about it! What we put up with.
Glenna, be sure to send a picture of your halo when it's finished- very exciting! The Xgeva is no biggie injection-wise. Tiny needle, feels like a quick bee sting then done. I get it in my abdomen alternating sides and my bones have been the only thing that have remained stable during this crazy journey. Wish my liver would pay attention!
I will be interested to hear about the Ibrance\ Faslodex combo for you....my new MO says she thinks I am too heavily pretreated now- whatever! We will be in a battle after this current drug stops working. She also had me meet to Palliative Team to "start getting to know them". They were great, she has no bedside manner!
Suzanne, hope your tooth/ dentist situation goes well! Hang in there. Your grandsons are going to love their lovely gifts. As for the bug robots...have fun, I can see those popping up everywhere!
Thanks for the good stories re Cis/gem. I have had a heavy cold/flu this past week- started right after my first session so hard not to feel miserable about the combo right now. I am starting to feel better again so now I am not as doom and gloom. Such a knife edge sometimes.
I send warm loving thoughts to you all!
Maureen
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Maureen, I am also heavily pre-treated but my onc still thinks I am a candidate. I am quite hopeful. He is supposed to be calling me today to go over details so I'll let you know what the final decision is. I've been really tired lately and haven't felt like being on the iPad at all. It seems like it's all I can do to keep up with Bill's and paperwork.
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didn't mean for that last post to be so short. Had a phone call and knew if I didn't post, I would lose what I had written. Hope everyone here is doing okay. We became friends in a pretty short period of time and now many of us heading to new treatments. That's what stage IV has been for me. Mostly short stays on a treatment. I sure was hoping for more out of halaven. My onc was supposed to call me on Monday but didn't. He never works on Tuesday so I am hoping to hear from him tomorrow. I have an appointment on the 13th for onc and chemo .... Hope that infill be starting the ibrance/fulvestrant combo at that time. Miss hearing from you all on this thread. Will try to find you wherever you're posting! Glenn
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hi all! Missed reading your posts. Got caught up tonight. The cherry blossoms are just beautiful.
I hope everyone that is getting off Halaben stays in touch here. You help me keep my sanity.
I can't wait to see a pick of your halo. Your grandson will be so proud!
I have not been on because of the stupid virus. Got it again. Now my boss has it. He is not planning on being to work until Monday. He went to his doctor and wound up getting an ultrasound even though the doc said it was a virus. Go figure.
Dental appointment had to be rescheduled because of the virus. I go in a couple of weeks. Having my eyes checked on the 11th. Seems my eyesight goes down about every 6 months. Staring to have problems with my regular glasses, but my sunglasses are fine. Go figure.
Well it finally happened. DH and I argued tonight. So tired of all he talks about is the cancer and the greenis (vegetable juice) and drinking the baking soda. Did not last long and both of us wound up crying and just holding each other. Have I said I hate cancer?
I go to the Onc for chemo and my ct-scan results on Thursday.
Here is praying we all beat this beast!
Suzanne
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Winter is returning with freezing temperatures at night and promises of snow flurries during the day, oh where is Spring?
The reduced dose lowered the side effects and kept lab results good so I was able to have dose two of this round. Hoping the effects are minimal and this will work for awhile. Nine months on Gemzar was the longest time on any treatment, hoping for a new record.
It is sad to see all of you leaving not only because the treatment has failed but also that there are so few of us. I asked the chemo nurse why there seemed to be so few on the drug and she said most people don't get this far on the list. I'm not sure that means we have been in treatment for longer or is it because we are going through the list faster.
How are you doing emotionally? I find the ups and downs harder to handle. One week we are talking about stopping treatment and the next celebrating the drop in tumor markers. My husband gets so up and starts planning trips and I try to be excited but reality keeps pushing into my emotions. Usually I am pretty upbeat and hopeful but not right now. Maybe it is the grey skies
I have been reading through the past posts to see who is moving on from Havalen.? If you are moving on, how long were you on Havalen?
Hoping for blue skies and good results from whatever treatments we are on with minimal side effects.
Phyllis
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Good morning to my halaven and ex-halaven buddies. I am moving on after 4 rounds. Still don't know what treatment I will be getting. Supposed to hear from my oncologist on Monday but he hasn't called me yet. I will be calling him today! He was talking about Ibrance with fulvestrant which sounds like a good opportunity for me. Hope he has it worked out. So, Maureen is on cisplatin /Gemzar, Phyllis you are still on halaven. Suzanne, are you still on Halaven?
I'm usually very positive, Pollyanna-ish, but lately have been really tired and spend a lot of time in bed. Sometimes sawing logs and sometimes just reading or watching t.v. I don't want to say I am depressed, but maybe I am, just a little. I usually want to get up and get busy doing something. Right now, I just feel like I could care less about anything. Don't know if that's because of being in limbo about my next treatment or just tired of treatment! LOL!
Being able to see grandchildren is the only thing that is giving me pleasure right now. I am thankful for having friends here that I can say whatever is on my mind to. It helps. Hubby doesn't want to hear it when I start my "what ifs". My sister loves me too much and I don't feel I can talk to her because she gets into an emotional state just thinking about losing me. I feel lucky about the time I have had .... 8 years in May since my recurrence. Never thought I'd be here, much less out and about, going on trips, babysitting grandchildren. Gotta appreciate the good things but when you're tired all the time, that isn't even easy.
Thanks for listening. I'll visit to see how you are all doing. Best wishes to all of you. May whatever treatment you are on kick cancer!!
Love, Glenna
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