How are people with liver mets doing?
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Woodylb,
What an awesome expression of what I believe all of our loved ones are feeling. You must be so proud of your son. My grown children live a four hour plane ride away and I know they feel the frustration of not being able to be here. But, I need to keep my job, to keep my insurance, to be able to continue to fight this monster. We talk daily and it does help, but not the same. At the same time, I think it will make it easier on them with some separation...easier to get on with their lives when/if the time comes. OK, no more rambling...just wanted to let you know how awesome your post and your son is! :0)
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Yay, babyduck!!! So happy for you!!! Keep on keeping on!!!
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Chichimaine,
I am so sorry about the mishap in your infusion. Don't you have a port installed? If not , i would advise you to have one , it really brings down all these IV problems. Most chemotherapies cause a flu like symptoms, bone pain, joint pain and an ill feeling. Do not worry about it unless you get a fever. I hope the next nevalbine infusion will be easy and that you get results. It is ok to nag from time to time , it is a rough road we all have to take . With the hope that this is just a bad episode which will habe a happy ending. Love to all.
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Dear chichimaine:
I'm on Navelbine and it wipes me out for a good 5 days. It seems like the side effects are endless. Nausea in the morning, restlessness, aches and pains, sleeplessness from the steroids, etc. I still thank The Lord for treatment, for keeping me with my family.
We all moan and complain. It's who we are now :-)
Prayers...
:-) Penny
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Penny and Chichimaine , may God give you strength to endure this treatment, and you are right Penny the important thing is that it is keeping you among your loved ones. God bless
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Woodylb...just read your son's essay....touched my heart! My youngest is 20 and away at school too. She doesn't talk about it much..it was so hard to tell her about the progression. I am determined to be here to see her graduate from college..it is my dearest hope.
Penny...has the neulasta made a big difference in your blood counts? Sure hope so, especially with the discomfort it puts us through. It seems to help me a lot although just this week I am really just feeling the fatigue from the chemo. When I walked to my car after the scans on Thurs...it was a slight incline up to the parking lot and I felt like I climbed a small mountain! I agree with you about the treatments giving us extra time with our families.....I need to remind myself everyday to be thankful for that, and to find all the many other things to be thankful for. Your faith encourages me.
Chichimaine...I hope your next treatment goes better than the last one. I am the non confrontational type too...sometimes we just know when something doesn't feel right...but it's so easy to feel intimidated by the medical staff. Sure wish you hadn't had to go through all that discomfort in your arm...Hope it's feeling lots better now.
babyduck...let me add another yay for your good news! May those treatments continue to zap those mets! Hope you are enjoying your weekend!
My thoughts are with everyone else too...Thank you all for the prayers and good wishes for my scans..Will let you know in a few days.
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Jaytee - I'll have to get back to you on that one. I just started the Neulasta shots. Time will tell! Praying...
:-) Penny
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Woodylb,
I had a port with the A/C and Taxol, but had to have it removed had way through the Taxol as I had blood clots form around it. So, we are trying to just stay with the veins from now on...will have them done at my onc's first and then go for treatment. Still lots of good veins left! :0)
Penny - thanks for the se advice...trying to get by on Advil for aches in bones and joints, but going to ask for something a little stronger. I haven't had nausea...Thank God!! I've managed to make it to work every day, so I'm doing ok..just moaning, as I said! lol
Jaylee-thanks and the arm is feeling better.Here's to hoping Monday's infusion goes alot better! Wishing you the best for your scan results!!
All of you on here are lifesavers...it's wonderful to be able to talk to ladies who absolutely understand! Sometimes putting on the smiling face for family and co-workers gets really old, so it's great to be able to vent a bit!! Love to all!!!!
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Thank you Jaytee, it broke my heart too. It is hard for them to talk about it, because if theybdonit makes our departure real. But they are aware of it. I told my son about the progression , because the last time i didn't he was very upset and felt left out. So it was a promise between him and me that i will tell him everything. It is really hard on them at this age because our presence for them is granted and even though they leave , they know we are in the back ground. When is security blanket is lefted, it is disturbing for the balance in their lives. This experience however, will make them grow faster and become wiser , it has to be handled delicately. Your girl will come around , she is probably filled with mixed hurtful emotions and show coolness , but it is not so. I ask God to bless her for you and give a long life. Hugs.
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Chichimaine , moaning is a must hehehehe
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Thanks woodylb...although I wish I knew just what she is thinking about everything, guess it will be when she is ready. She is coming home next weekend and I am going to enjoy every minute of the time we can spend together.
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I hope you have a great time with her. If you are worried about the future pass your messages, in a normal discussion smoothly, she will know what you mean , and you will understand each other without talking. It is hard for some people specially young adults to voice out their fear and emotions. Have a great time with her.
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Hi chichimaine / Penny,
My mom was on navelbine before a year and she had a terrible time with it. She used to take shots to increase her white blood cells. Navelbine caused terrible nausea due to low blood pressure. She use to have Gatorade daily to make sure her pressure was fine and kept having ensure to make sure she does not loose weight. Hope it helps and you feel better.
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Thanks, JCSindia. I actually just started drinking the Gatorade to keep my electrolytes up. It helps a bit.
:-) Penny
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Thanks, JCSindia,
Fortunately, my blood cell counts are still good and I have been blessed not to have nausea...heartburn, yes, but i'll deal with it. Today's infusion went really well..no mess ups with the IV and was in and out much more quickly. Blessings to all!!! Debbie (chichimaine)
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Good morning ladies. Catching up with everyone. Sounds like all are hanging in their. Thankful for every moment. Praying for scans to be clear and treatments to work! I go tomorrow to confirm my next move. Anybody had the Y90 (SIRT) Spheres treatment? I think that's next for me.
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Hey Babyduck,
Hello to you too, as you said we are all hanging in here , and we thank God for each day. My scan will be around december and I pray it will be good. I wanted to ask you on what basis they choose SIR spheres, and how many tunors in the liver you have if you don't mind me asking? Wishing you lots of luck on your next step . Keep us posted.
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I have 100 or so liver lesions, liver function is still okay has anyone had that instead of large masses??? ... I will be starting new chemo soon.? please let me know.
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Hello ladies,
I have some news to share with you and i hope it would be of help . I got my results for molecular intelligent test because my liver biopsy showed some change in HER2 status so a FISH test was performed and came back negative. However, the genomic test came back positive for HER2 and showed that i may benefit from all Her2 targeted therapies and all HER2 pan inhibitors. It also showed that i would benefit of all anthracycline such as taxotere , doxil paclitaxel , ellence etc... It also showed another kind camptosar as a potential benefit. However, it showed no response on Gemzar ( i got gemzar as first therapy after my reoccurence) . It is confusing as a result and it requires a multiple options and opinions. I am waiting for two cancer boards to decide what to do. For now i am still on xeloda till further notice, with a little increase in tumor marker. I hope these info helped. Love to all.
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bestock - curious to know what chemo you will be starting. Do you have any symptoms with your liver mets? Amazing your labs are good, that's wonderful. I had my second infusion of doxil & have been dealing with the side effects - seems I get one good week out of the month (ugh); now hand/foot syndrome despite trying methods to prevent and/or minimize it. Getting scanned Monday to see if the doxil is doing anything positive; I have a feeling it's not. I personally think it's too early to scan as I only had my second infusion on the 6th. On the other hand, mo doesn't want to leave me on something that's not working. If this hand/foot (mainly foot) gets any worse I won't be able to stand it anyway. Just hope the liver hasn't gone crazy since August making new mets.
Woody - your son's paper was so well written & from the heart; I understand how proud you are of him.
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Dearest Woody...I'm so glad you shared your son's insight into your diagnosis...and living this life. He is a wise child (young man...but he'll forever be your child). Writing this had to be a difficult thing, but also so healing. Sharing with you...a gift! Those things are sometimes felt but not communicated. Yes...I pray for that miracle for you, as well. Tell him I'm sending a virtual hug from the Pacific Northwest
Chichi...I was told Navelbine has to go in a port. I've seen a couple people experience trouble in the vein. Will your onc schedule that for you? I've had no complications...ses yes, but mild. I know you probably hate the thought of a port...it's my best friend!!!! Please ask!
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syrMom Ixabepilone it the drug I will be on, I am waiting and hate to wait for approval for co-pay assistance...Oh i have some pain in back and liver area that is about it, not severe, and tired now, more than ever. becky
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woody... the SIR spheres was recommended because I had more than two lesions. Two that were noticeable and small ones throughout. So we set it up before my ct. However the report from the radiologist gives on ct is only talking about one. I just got the report today and haven't spoken to oncologist. Also I had a second opinion at Sloan Kettering in New York and the oncologist there recommended SIR spheres too. The two now confirm with each other on my treatments so I'll go with it....Praying your scans are GREAT.
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Checking in with everyone today ........I saw my onc and had a treatment. The scan results were good! The bone scan was clean...I have not had any progression there and she ordered it just to recheck. There is still a little bit of fluid in one lung, but not enough to warrant draining it. The lymph nodes in my chest and abdomen remain resolved. She said that the 3 spots on my liver look to be 90% gone. I was so happy to hear that.....the taxotere was evidently a good first choice of treatment for me at this time. I will also add my many thanks for a lot of people who have been keeping me in their prayers! When I think back to my oncs first call to me when I had the first scans in the spring.....She said it didn't look good...and there were numerous lymph nodes lit up in my chest and abdomen. I was not feeling very positive at all.
I was able to get an infusion of herceptin today although she decided to still hold back the perjeta. The cardiologist told me that my ef number was 45, but in his report to them, it is shown as between 40 and 50. That worries her if it is closer to 40. Anyway I am on strict orders to tell them if I have any shortness of breath. I am going to take it easy the rest of the week. I will have the neulasta shot tomorrow so will probably be feeling pretty crappy through the weekend...but will feel thankful too.
Woodylb, I hope that the 2 cancer boards will make the best decision for you on the her2 status and what treatment you get. Bestock, same for you, I hope that they find a good treatment that will knock those liver lesions back. I'm glad that your liver function remains good...sounds like a good sign. SyrMom....thinking of you and hoping that there won't be any new mets either. Babyduck, I don't know anything about the SIRT treatment but will be praying for you too as you go on Monday to find out your next step. And chichimaine, so glad your infusion went better today...my prayers to you and everyone!"
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Jaytee - thanking The Lord for those good scans! Woo Hoo! Love good news!
- Penny
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Thanks Penny, I think that we caught the liver mets pretty early. Late last fall,I had a cat scan of abdomen for something unrelated to cancer (had a gallbladder attack) both the surgeon and my onc told me there was no sign of cancer then. I had my regular 6 month check up in Feb...no scans then, but there were no increased tumor markers or anything that made her suspicious. 3 months later I had a cough I just couldn't shake and finally went to my family doctor...he saw a pleural effusion on an xray and sent me for a cat scan....when I got there my onc had ordered an abdomen scan also and that is when they found the liver mets. My nurse at the oncs office told me that they rechecked last year's cat scan to see if they missed anything, but there was nothing at that time. Amazing how quickly those cells can spread. I am so thankful for the good scans right now, but know that we will have to be forever vigilant. I often in the past took good health for granted and I miss those days!
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Syrmom, thank you so much , yes i am very proud of my son he has become a wonderful man.
). I hope you get good results on Doxil and less SEs. Ronniekay , you words are music to my ears
) and yes it is very hard for him to talk about this , this essay showed me how scared he is fof me. God has answered my prayers and his , he opened another door . My genomic tests came back showing positivity to HER2 and potential benefit from all her2 targeted therapies, as well as her2 inhibitors and taxanes. It gives ves my docotrs a lot of possibilties , well at least more than i have now. Hugs. Jaytee, i hope your scans are stable and good. My prayers are with you and everyone else. Love to all.
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RonnieKay,
I had a port after my original diagnosis, but clots developed after less than three months and it had to be taken out. So, they don't want to try a port again. I had my second infusion of Navelbine on Monday with no problems. Went to onc's office for IV and then to treatment...I am lucky that it just two floors down from my onc. My se's are relatively mild, too. Days 2 and 3 are my upset stomach/nausea days, Days 3 and 4 are my aches and pain days, and then I start feeling better just before the next infusion.
Jaylee...Yahoo for the good scans!!!
Woodylb...genomic results sound a little confusing, but also encouraging in that it seems a lot more options for treatment seem to have opened up. That's what I'm praying for you!!
Blessing to everyone and keep on keeping on!!!
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Thank you Chichimaine, me and my doctors are hoping for the same. I hope you keep having mild effect on nevalbine. I had a port at my first dx which was removed after one year. Upon reoccurrence it was reinstulled standard peocedure . I am glad your veins are strong it is a plus. Keep us posted.
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thanks to all for concern and prayer.............so far so good with new chemo Ixabepilone.............Neulasta today will have to try the claritin that is suppossed to help, had one yesterday and willl for a few days..
becky0
