kathyb
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Hi BigSister,
I’m sorry your sister was diagnosed with advanced cc. I was diagnosed with stage 4 a little over a year ago.
My platelets came back up, but now my white blood count is too low so I’m waiting again for chemo.
I am not aware that chemo is unable to shrink a tumor. From what I’ve read on the board, chemo has been able to shrink tumors to the point where some people have resection. My tumor size has been the same size since chemo and radiation last fall. I was told last fall it could be dying from the inside out because of a color change (but there was no way they could know that without surgery – I am inoperable). I’ve chosen to think it’s dead. I’m having Gemzar/Cisplatin now to keep it from coming alive again (that probably doesn’t make sense with what I just said) and hoping to slow down the appearance of new tumors.
My stomach has gotten bigger but it’s from all the food I’m eating. I’m on steroids 4 days a week during my chemo weeks. I just eat, eat, eat. Have you been told it’s from the tumor? I’ve read on the board about some people having ascites and they look pregnant. Hopefully someone else will tell you more about this. I would definitely ask the doctor or chemo nurse – whoever you see first. Or call the doctor because it may be very uncomfortable for her.
Also, they should be able to give her medicine to control the nausea pretty good. What is she taking for nausea?
Hope this will be a good weekend.
Kathy
Now it’s low platelet count – and GREAT news!
To our surprise my platelet count dropped to 36 (36,000). It has to be over 100 to have chemo. I will have a blood test locally on Monday to see if chemo can happen next Wed. (Hope my white count will still be ok). The doctor said I do not need to worry about bleeding out at this point, but if I got into an accident or cut myself I would be in trouble. I’ve only had 2 1/2 cycles. Anyone have advice/experience with this?
Also, no massages at this point
I have a gift certificate that will have to wait.GREAT news!
MRI showed no new tumors and that old Klatskin tumor is still the same. (I think it’s dead). Everything is stable
I am on on the Gemzar/Cisplatin chemo. Have only completed two cycles ( 1 cycle = 3 weeks, two on and one off) and had to delay the second cycle because of low white blood count.
EMEMD is the main nausea drug they give me (one on chemo day and one for two days afterwards) that totally controls nausea. It’s suppose to work for a couple of days after you stop taking it, which it does.
I also have an inoperable tumor. Diagnosed in July 09. I was told I could have as little as 3 months. Boy were they wrong
ScottsMum,
Metal stents can become clogged/infected. Mine did within 5 months. They were able to unclog it pretty easily and I had a shorter recovery time than my other planned plastic stent changes.
I think my “total bilirubin” lab work was the main indication it was blocking (which showed the bile was in my blood stream) but I was also very sick.
Kathy
Isisman,
I know what it feels like to give up hope, and I pray for hope to come back to both of you soon.
Kathy
Social Security has a Compassionate Allowances list for fast tract approval. I applied for SS disability about a month after I was officially diagnosed and approved two weeks later. Although I can
I’ve read on this board recently that COBRA insurance is not required to give you the same coverage you had. I believe the person said he was going to have to pay $800 a month for “non coverage” as it would only pay for some blood tests, no chemo or treatment for cc.
This really surprised me as I thought COBRA was always the same coverage you had. I asked a business person I knew who had COBRA for one month when needed and she told me the same – it is not always the same coverage and was not for her.
If insurance companies can choose to give you different coverage, COBRA is not necessarily the great thing I thought it was.
Here is a list of states that have passed a clinical trial amendment for their state:
http://www.cancer.gov/clinicaltrials/ctlaws-allstates
I hope it becomes federal law.
White blood count finally was up last Friday. Tomorrow (Monday) I will have chemo again. They are going to lower my dose of Gemzar by 20%. Cisplatin will stay the same.
Had lab work done locally today as I was suppose to have chemo this Wed. Last Wed my WBC was 3. and my Neutrophils was 1.22. My oncologyst said it was borderline, but since I was high risk for infection they did not want me to have chemo. Last week he said the Neutrophils was what he was most concerned about but thought it should be on its way up (it had been two weeks since chemo). Today my WBC is 2.9. and my Neutophils is .52. (Under .5 you are at a sever risk for infection).
This brought me down for a short bit. The plan is to have more lab work locally on Wed. and then if the Neutophils is up to 1.5. (or maybe even 1.4) I could have chemo on Thurs or Friday of this week. If not, then it’s another blood test on Friday. If it doesn’t come up he did mention something about shots.
If I’m going to do this chemo thing, I want to do it and not have delays! If I truly believe God is in control of my treatment plan, I probably should not be stressing about this; but instead thanking Him. Sometimes those detours in the road that irritate us so much are keeping us safe from a bigger problem had we been able to go straight ahead.
Kathy
“I thought people with cancer LOST weight. What’s up with her?”
It’s good to hear there are others who have gained weight, too. I added 3 pounds after one chemo treatment! I told my oncologist I cannot gain 3 pounds each time with 7 more cycles coming up. I eat all the time when I’m on steroids. He responded he doesn’t have a problem with it.
My husband has heard this comment, “She doesn’t look sick and she still has her hair. It must not be too bad.” ahhh ok
Thanks Linda and Nancy, I really appreciate your input. My oncologist and I talked briefly about the shot. I was very apprehensive about a shot in the stomach. Guess I shouldn’t be.
A note about the Emend. My insurance has been very good about paying, but I did discover (after my third chemo) that they denied paying for the EMEND pill I’m given while at chemo. This is a $275 bill every time. I get the two EMEND pills I take afterwards I at the pharmacy and they are paid for with a co-pay. The pharmacist told me it comes in a 3-pack (with the same co-pay) and I should ask the doctor for a prescription for the 3-pack, taking the first at my chemo appt. so I won’t be charged the $275 at chemo. Someone told me this is backwards of most insurance policies. I don’t know, but I have the 3 pack now.
