folfox club my #3 treatment
Comments
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Hi Lou
Hi Lou,
My name is Anna, and I am new to this blog stuff. I was diagnosed 2 yrs ago, Stage IV metastatic colon cancer. (spread to liver) I was 48 when I got this great news. Of course, never sick a day in my life before all of this. I was on the Folfuri/Folfox. Now am in a clinical trial. Never had the nausea, just slight tingling in my hands. It won't necessarily get worse. Mine didn't. Keep on fighting and stay strong.0 -
Hi Lou
Hi Lou,
My name is Anna, and I am new to this blog stuff. I was diagnosed 2 yrs ago, Stage IV metastatic colon cancer. (spread to liver) I was 48 when I got this great news. Of course, never sick a day in my life before all of this. I was on the Folfuri/Folfox. Now am in a clinical trial. Never had the nausea, just slight tingling in my hands. It won't necessarily get worse. Mine didn't. Keep on fighting and stay strong.0 -
Welcome Anna!annad723 said:Hi Lou
Hi Lou,
My name is Anna, and I am new to this blog stuff. I was diagnosed 2 yrs ago, Stage IV metastatic colon cancer. (spread to liver) I was 48 when I got this great news. Of course, never sick a day in my life before all of this. I was on the Folfuri/Folfox. Now am in a clinical trial. Never had the nausea, just slight tingling in my hands. It won't necessarily get worse. Mine didn't. Keep on fighting and stay strong.
I am glad you have come here + found this wonderful place for we who have this disease. I hope you find it as useful as I have.0 -
Be Careful, Lou
Your platelet count is at a dangerous level to be receiving Folfox. 90-100,000 is the general minimum threshold.
Your onc should know this and in no way should he have approved your treatment with your platelet counts at 53,000.
The issue is blood clotting. Folfox has a way of really cutting your platelet counts down. I got down into the high 38's and 40's at my lowest and we ended up discontinuing treatment. When platelet counts get at or below 20,000 you can begin to bleed internally for no reason whatsoever and there is not a thing that the doctors can do for you.
Be careful now when operating a motor vehicle as an accident could have serious reprucussions. Any little cut from sharp objects and it will take quite a bit of time to clot.
Maybe there is a reason he is called "Dr. Death." 53,000 is too low...if your onc does not speak up - then you should.
-Craig0 -
Hi Anna, welcome to thisannad723 said:Hi Lou
Hi Lou,
My name is Anna, and I am new to this blog stuff. I was diagnosed 2 yrs ago, Stage IV metastatic colon cancer. (spread to liver) I was 48 when I got this great news. Of course, never sick a day in my life before all of this. I was on the Folfuri/Folfox. Now am in a clinical trial. Never had the nausea, just slight tingling in my hands. It won't necessarily get worse. Mine didn't. Keep on fighting and stay strong.
Hi Anna, welcome to this crazy place where the names are different but the stories all have a familar ring! I too am in clinical trials. I go to UCSF. Write back if you like, I would love to hear your story. Jean0 -
Lou, so sorry you are having
Lou, so sorry you are having a tough time right now. Hang in there, but don't forget to stand up for yourself and let them know if it is to much! I know that I didn't always do that because somehow I thought, of was afraid, that saying no to something in treatment put me a risk for not going NED. We really have to look out for ourselves. Hope you feel better soon! Go ahead and nap!! Best to you. Jean0 -
Hope you feel betterchicoturner said:Lou, so sorry you are having
Lou, so sorry you are having a tough time right now. Hang in there, but don't forget to stand up for yourself and let them know if it is to much! I know that I didn't always do that because somehow I thought, of was afraid, that saying no to something in treatment put me a risk for not going NED. We really have to look out for ourselves. Hope you feel better soon! Go ahead and nap!! Best to you. Jean
Hope you feel better tomorrow! Sorry things were rough today!
Hang in there! Following you and Lori's posts as my husband just completed his 2nd treatment, things are much harder after this treatment. )o: Your in my thoughts!
Chriss0 -
PlateletsSundanceh said:Be Careful, Lou
Your platelet count is at a dangerous level to be receiving Folfox. 90-100,000 is the general minimum threshold.
Your onc should know this and in no way should he have approved your treatment with your platelet counts at 53,000.
The issue is blood clotting. Folfox has a way of really cutting your platelet counts down. I got down into the high 38's and 40's at my lowest and we ended up discontinuing treatment. When platelet counts get at or below 20,000 you can begin to bleed internally for no reason whatsoever and there is not a thing that the doctors can do for you.
Be careful now when operating a motor vehicle as an accident could have serious reprucussions. Any little cut from sharp objects and it will take quite a bit of time to clot.
Maybe there is a reason he is called "Dr. Death." 53,000 is too low...if your onc does not speak up - then you should.
-Craig
The radiation I had over four years ago really damaged my bone marrow in my hips to generate platelets and white blood cells. I generally hover around 88-90 thousand when not on chemo. I dropped to 66 thousand after folfox #2 and obviously dropped some more to almost 54 thousand before #3. I don't like it either. I'm doing a CBC lab next week whether they want it or not first to see if Neulasta works and doesn't kill me. I have sort of a rare blood type but hanging a bag of platelets (blood) may become necessary and dangerous or just holding off for a while if next week my count doesn't improve. My Onc said 10 thousand would make him nervious since I am likely one of those people who never had a high CBC anyway but I'm not stupid, I will never let it get that low. I once lost a patient in a simple fender bender who struck his abdomin against the stering wheel. He was out walking around helping the other people and colapsed. Ruptured spleen...I poured fluid into him from two IV's and he never made it to the hospital 15 minutes away. Doctors said his only chance would have been if he was laying on the operating table when the rupture occurred. I'm keeping a careful eye. As a paramedic for many years you learn quick that there are good doctors and bad. To save lifes in trama centers we often shopped for the good ones on-duty. We knew it doesn't take long. I appreciate your insight there are a lot of smart experienced people here. Lou0 -
infusionAnneCan said:Sorry
Lou, I am sorry you are not feeling away. I think the infusion rate can make a big difference.
I hope your nap helps + you feel better soon.
I know now in my case infusion rate really does make a difference. As much as I hate sitting in that hospital for three hours of drips...I think I'll get comfortable and do it anyway. My smart ONC PA gave me a suggestion that surprised me for nausea. I get it bad about 4-10 times a day on chemo. She told me to take a calcium based antacid like tums. Worked like a charm. She is 28 years old incredibly bright and matches me a one time bio-chemistry/chemistry freak many years her senior. I thought can't be something that simple receptors in the stomach need strong medicine to fight the affects that cause nausea...lesson learned again sometimes its something simple. Cudo to her! Nap helped fingers are returning to normal.0 -
folfox clubokthen said:Hope you feel better
Hope you feel better tomorrow! Sorry things were rough today!
Hang in there! Following you and Lori's posts as my husband just completed his 2nd treatment, things are much harder after this treatment. )o: Your in my thoughts!
Chriss
Sorry to hear about another member to the folfox club. I am ahead of him for now but if my platelets don't start going up I may have to delay treatment and he and Lori may pass me. I do not like the interuption of treatment. Its a Lou thing I am remarkably stubborn. It will take a lot for me to interupt my treatment schedule. Wish him well I hope our bodies can make some adjustments along the way and these troubles can be addressed. I am impressed by those who have come before us and did the full 12 treatments. I'll tell you a quick story. A few years back I was getting interviewed for a job. One of the interviewers was a SWAT officer. The type who think they are elite and tuff but usually pee their pants without full body armor and machine guns but I digress. He asked me what made me think I was strong and tuff and I told him I was a cancer survivor aint no stronger or more courageous people I know! He laughed! I told him I would take a cancer survivor to cover my back anyday before him or his people. I didn't get the job but it doesn't change the truth. Hope your husband feels better too...he'll be another cancer survivor too. Lou0 -
stubbornchicoturner said:Lou, so sorry you are having
Lou, so sorry you are having a tough time right now. Hang in there, but don't forget to stand up for yourself and let them know if it is to much! I know that I didn't always do that because somehow I thought, of was afraid, that saying no to something in treatment put me a risk for not going NED. We really have to look out for ourselves. Hope you feel better soon! Go ahead and nap!! Best to you. Jean
My wife gets angry at me for taking on more than I should. I too am concerned about interupting treatment for minor things like bleeding to death internally. I am a stubborn guy! thanks chriss Lou0 -
I hate to say welcomeannad723 said:Hi Lou
Hi Lou,
My name is Anna, and I am new to this blog stuff. I was diagnosed 2 yrs ago, Stage IV metastatic colon cancer. (spread to liver) I was 48 when I got this great news. Of course, never sick a day in my life before all of this. I was on the Folfuri/Folfox. Now am in a clinical trial. Never had the nausea, just slight tingling in my hands. It won't necessarily get worse. Mine didn't. Keep on fighting and stay strong.
I hate to say welcome because the price of membership is cancer. Still here is a good place for those of us who fight the beast. Chemo *&#$@* sucks there isn't a polite way to say it that says it better. You have been through more than I chemo wise since I am new to Folfox on this reoccurrence and used only xeloda with my original cancer. I admire your strength. Lou0 -
#3Lori-S said:My FOLFOX Buddy!
Sorry, oxy really bad in fingertips this morning ... shock each key stroke but, wanted to say HEY! Sorry you're having a tough round ... drip rate does make a difference. Thinking of you
Fingers are improving still get a reaction to some cold but not bad. Off the pump today should get sick for 3-4 days. Tums have really helped with the nausea who knew? So much for the precription they gave me. Day five my daughter and grand baby headed back to Florida. They visited with us for about three weeks while her husbad was in training in Ohio. He's in the coast Guard but works for the airforce so he is assigned in Florida. They are moving to Colorado in about a year and half. Another advancement and choice of station. I know both Florida and Colorado pretty well. I love Colorado for the powder skiing and back in the day Florida for the bikinis. I am happy for them and if I make through this reoccurrence my wife and I will be doing a lot of travel and having some fun. Oh yea my daughter is going to have another baby in May. This will bring my ability to rapidly spoil them to three. My oldest daughter has a 3 year old my youngest has the 18 month and a newborn on the way. Live is good if we can beat this stuff. You know Lori every now and then between the side effects and the worry, it's good to not be the center of attention because of cancer. Hang in their kid we'll get through this. hugs Lou0 -
LOU
Just want you to know, thinking of you!!!!0 -
LouLOUSWIFT said:#3
Fingers are improving still get a reaction to some cold but not bad. Off the pump today should get sick for 3-4 days. Tums have really helped with the nausea who knew? So much for the precription they gave me. Day five my daughter and grand baby headed back to Florida. They visited with us for about three weeks while her husbad was in training in Ohio. He's in the coast Guard but works for the airforce so he is assigned in Florida. They are moving to Colorado in about a year and half. Another advancement and choice of station. I know both Florida and Colorado pretty well. I love Colorado for the powder skiing and back in the day Florida for the bikinis. I am happy for them and if I make through this reoccurrence my wife and I will be doing a lot of travel and having some fun. Oh yea my daughter is going to have another baby in May. This will bring my ability to rapidly spoil them to three. My oldest daughter has a 3 year old my youngest has the 18 month and a newborn on the way. Live is good if we can beat this stuff. You know Lori every now and then between the side effects and the worry, it's good to not be the center of attention because of cancer. Hang in their kid we'll get through this. hugs Lou
Congrats on the new grandbaby coming. How exciting and what a relief to have something so positive to focus on. Sometimes life keeping on gets to be a drain while doing this cancer thingie but, sometimes the good stuff that comes makes it a lot better and easier. I'm glad that you got some good time with your family this round.
Yep I get unplugged today. My kids call it "Mom Unplugged" ...Like I'm doing an MTV appearance or something. I'm hoping the fingers get better so I can chronicle my #2 round for the board. It's tough to type with gloves on! But, I want to make sure that everyone know, I'm still here ... and thinking of everyone. Got to keep those fingers warm or the shocks are really good. We're doing this Lou .... yep, we're doing this! HUGS to you too.0 -
Hang in there Lou. heyherdizziness said:LOU
Just want you to know, thinking of you!!!!
Hang in there Lou. hey thanks for the TUMS advice. will try that myself.0
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