Forum Replies Created
March 10, 2012 at 9:22 pm in reply to: Phase I Clinical Trial Working for me #58785
Yes, I receive Gemcitabine once a week for three weeks in a row. Then a week off. The oral drugs are taken daily.
KathyMarch 3, 2012 at 5:59 pm in reply to: Fourth cycle hit hard #58207
So glad Marina is feeling better.
Just a thought. Even though Compazine and Reglan cause the same side effects, doesn’t necessarily mean Marina will react the same to both drugs. Maybe they even work differently. I don’t know.February 28, 2012 at 2:48 am in reply to: Fourth cycle hit hard #58199
I always got sick after chemo until I started drinking at least 100 oz of mostly clear liquid (not pop) in the 24 hrs after chemo. It’s not an easy thing for me to do as I usually don’t drink a lot. I have to keep track of the ounces as I drink.February 26, 2012 at 1:23 am in reply to: gemzar and cisplatin #56946
I have been on gemzar/cisplatin. It was planned for 8 cycles. Chemo had to be postponed a couple of times because my white cells were too low. Had the neulasta shot which worked well, but I had a bad reaction after the third one. My oncologist told me they really didn’t know if 8 cycles were better than 7 and said we should stop at 7.
I decided to do this treatment 8 months after I ended my first treatment session of radiation and FU-5. I learned from this board how new tumors often come and started the gems/cits as a precaution.
Stayed stable for another 8 months and then a couple of new spots appeared on my liver. Now on a phase I clinical trial for the last 7 months. Doing good. Feel good.
I’m 31 months from my inoperable stage 4 diagnosis. Original time line was 3-14 months.
Hope you hear the news you want to hear on Monday.
KathyFebruary 15, 2012 at 11:44 pm in reply to: Ativan. Zofran. Decadron. #57790
When I was having radiation and 24/7 chemo in 09 I felt nauseated all the time. Zofran,, Activan and Compusine did not help the nausea. As it turned out, I had an ulcer on my esophagus which caused the nausea. Four days on a high dosage of prilosex and I was no longer nauseated.
This may not apply to your mom at all. We are all so different.January 30, 2012 at 2:50 pm in reply to: chemo and radiation at same time? #57027
When first diagnosed 2 1/2 years ago I had 24/7 FU-5 chemo (using a pic line) and 28 radiation treatments during the same time frame. The tumor never shrank, but it definitely stopped it in it’s tracks as it’s been stable ever since.January 24, 2012 at 9:13 pm in reply to: Medicare and Transplants. #56633
Always great to hear your story. You are right, statistics are not always correct. I am 2 1/2 years out with inoperable stage 4 and still feeling good. Did not qualify for a transplant because my tumor grew too large, but looking back I would have been a great candidate. I understand how they have to have and follow protocols though.
I, too, recently qualified for medicare because I have been on ss disability for 2 years. I’m sure you know all this, but a full insurance policy is better than a supplemental policy with medicare. Supplemental policies only cover medicare approved procedures.
Medicare does not cover transplants for cc, but a full policy may. I am fortunate to be on medicare and then pay over $500 a month for my BCBS policy. For me, it’s a bargain. There may be procedures in the future which medicare will not pay, but my full policy will.
My 3rd coverage with United Health Care just refused my referral to Mayo and said they will not cover me for routine care because I am on a trial. That happens to be against our state law, but because it’s a self-funded ERISA insurance (which I’ve learned that 1/2 of all large businesses and now many smaller businesses have – to save money) this full insurance policy is not subject to state insurance laws or regulations.
Provisions in the Affordable Health Care Act (Obama HealthCare as some call it) requires: # Ensuring Coverage for Individuals Participating in Clinical Trials. Insurers will be prohibited from dropping or limiting coverage because an individual chooses to participate in a clinical trial. Applies to all clinical trials that treat cancer or other life-threatening diseases. Effective January 1, 2014.
It really irks me that an insurance company will use anything they can to disqualify you from routine care. They were not asked to pay anything in connection with the trial. The National Cancer Institute pays for my trial drugs. How can effective treatments ever be discovered if clinical trials are not conducted? We need more clinical trials and more people to participate in them.January 14, 2012 at 7:17 pm in reply to: Is Tylenol bad or good? #56571
I corrected my post above. It was wrong.
Realized that after I read PCL1029’s post.
Thank you PCL 1029.January 14, 2012 at 3:14 pm in reply to: Is Tylenol bad or good? #56569
I have been told by 3 different GI and oncology doctors not to use Tylenol (or drugs that are acetaminophen). One GI doctors made the comment that you don’t give GI patients Tylenol (after I was given some in the hospital). I’m told to take Ibuprofen when needed.
THIS IS TOTALLY WRONG! I should not post if I can’t keep things straight. Tylenol is what I can take – up to 2000 a day. Ibuprofen is what I am NOT suppose to take.January 3, 2012 at 6:32 pm in reply to: ammonia free hair dye? bad idea right? #56053
Before Thanksgiving I had my hair cut very short because of thinning. Have always had very thick hair and didn’t expect this side effect, especially after not loosing any hair on my previous treatments. Right before Christmas my son shaved it for me. The bald spots showing through were causing me too much stress.
Some people look fantastic going natural without hair. I look freakish. Some people look adorable in hats. I look really dorky. I do have a couple of wigs. My husband and I can’t tell who wears a wig and who doesn’t. Most look really natural.
Around home often go with nothing on my head. I actually don’t like wearing wigs. I think it goes with my personality of very rarely wearing heals, (preferring Birkenstock), and not being able to wear flip flops because I can’t stand anything between my toes. In public, I always wear a wig. I have one that looks like the style my hair has been. People who don’t know about my hair loss even mention how nice my hair looks.
As for the hair dye question. My friend (going through chemo) was told to use something like Natural Instincts that didn’t have ammonia or peroxide in it.
Do whatever you think will make you feel the best.December 23, 2011 at 1:23 am in reply to: anniversary #55815
Thank you for sharing your story and your faith. Praise be to God.December 20, 2011 at 10:41 pm in reply to: question about no surgery #55805
Your friend is misinformed. I have always been inoperable. Originally given 3-14 months to live. I’m now almost 29 months out and doing good.December 16, 2011 at 11:05 pm in reply to: Latest scan #55636
Not the news we want to hear, but it’s not the end of the rodeo. I was diagnosed at stage 4 and given 3-14 months max. Here it is 28 1/2 months later and I am totally enjoying life.
Keep your faith in God. He will carry you through.
KathyNovember 26, 2011 at 5:05 pm in reply to: Long overdue update… #54795
Good to hear from you. I sent you an email on the board, but the first try failed to go through. Let me know if you didn’t get my second try.
God bless you,
KathyNovember 22, 2011 at 6:49 pm in reply to: My Tom is gone… #54827
I, too, am sorry for your loss. You have been one of the very best caregivers.
With prayers and love,