Hi, Lostsoul,
I was on Gemzar/Cisplatin from Sept. '10 to June '11 and my hair got very thin.  I had gotten a wig just in case I would need it.  But since it did not come out in patches, I did not really need the wig.  When I was off of chem for three months, my hair grew back, but now that I have started the chemo, again, I am beginning to notice more hair in the comb.  I have only had chemo three times so far as I have had to cancel a couple of times because of low platelets or white blood cells.  I was hoping to do 2 weeks on and 1 off, but it looks like the most we can hope for this time is every other week.
Best wishes to you.

2

(19 replies, posted in General Discussion)

ca-Paul
I am an old member of the board but I have not posted for several months.
I found the members very friendly and helpful, but then when I started losing my discussion board friends, I had to back away.  I would check the board every now and then but did not get involved, again.
When I read your postings, I felt I had to say something to you.  I am in your brothers shoes with a high CA-19 count.  It worried me for it seemed like I was the only one with such a high count, and my oncologist would try to assure me there are several things that could make the count go high and that the scan is what they really rely on.  My count was up to 15,000 before they started chemo, again, last August.  After I had a few rounds of Gem/Cis, the count went up to 21,000 and then slowly it began to come down.  The CT scans are showing no shrinkage, but it is,also, showing no growth.  My oncologist and I are both please with my last blood test for the CA-19 is lower than it was when I was first diagnosed in July, '09.  It is still high (941) but much lower than it was a year ago.  I am still getting chemo but not as often as when I started.  Like your brother, I feel good most of the time.  Since your brother got a second opinion from Dr. Fisher, I take it that you are from California.  Where is your brother going for his chemo?
I go to an oncologist in Monterey, but I, also, see an oncologist at UCSF Medical Center.
I wish your brother the best.

Hello, Marion, so glad to see that you are still here with all of your help.  I hope that you are doing well.

Hello,

Just a little update on me.  My #16 Gem/Cis was cancelled yesterday because of low white blood cells.  Because I had planned a short trip with my family, the doctor is giving me three weeks off before starting chemo, again.  I feel good but was really getting tired, so I think I needed this three weeks off, before I start more.  I had a little nausea along the way, but the biggest complain was the fatique.  My hair was really thinning so this might give it time to start growing, again.

Best wishes to you all.
Theresa

Patti,

So glad to hear the good news.  The doctor must think that since the small tumors did not show up and two of them did not show much change since the beginning, that it is such a slow growing cancer, then 3 months would be too soon to show any change. 

That's great news.  Hope you agree when you see the CD and the report.

Best wishes,
Theresa

5

(19 replies, posted in Introductions!)

Brad,

Thank you for taking the time to write to me about the Block Center.  It's nice to know what someone thinks who has been there. 

I hope you are having success in your search for your treatment.  It is a big decision to make and I hope you will find more than one option.

Best wishes to you.
Theresa

Patti,

Hope you had good news at your appointment on Wednesday.  I will be anxious to hear how it went.  You are an inspiration to us -3.5 years and going strong!!

Thanks for the list of what you have been taking.  I have not heard of these, but I am going to run them by the naturalpatic doctor that I see.  I do take  Total Omega 3-6-9 and HMF Neuro Powder (probiotic).

Best wishes to you,
Theresa

Michelle,

I started chemo and radiation and sent my papers to several surgeons to get second opinions while I was having treatments.  It turned out, they all agreed that I was not a candidate for surgery.  I had one doctor that told me that you can stop anytime if you do not like the way it is going and if you think it would be better for you to go elsewhere.
I had my first round of chemo with one doctor but as soon as that cycle was over, I started seaching, again, and this time I am going to a different oncologist.
Best wishes.
Theresa

Hi, Shari, and All,

I don't think I have posted, again, since my CT scan the first of the month.  Like you, Shari, I was really anxious, but when it showed no growth or new ones, I took it as good news.  Hope you will have better news with some shrinkage.
I had my 15th chemo today of my 8 cycle period.  The blood tests all looked pretty good.  A few little low but not too low and the CA 19 marker came down again (still very high) but it is going in the right direction.  Going in to the thinking that things were looking up, I was feeling pretty good after my week off and knowing only one more to go after today.  Then, I was given a schedule for two more months.  I told the doctor that I was ready for a vacation!!! BUT he said he wanted to keep going until the CA-l9 stopped going down and was at a stand still.  He has ordered another CT scan even though I had one the first of this month.  He said they usually have one every two to three months.  But before we take a break he wants to see another one.  What do you all think?  Should I push stopping after my 8-cycles?  I hate to get immune to Gem/Cis for I have tolerated it so well.
Just constipation and nausea but not that bad.  I have heard that this combination has fewer side effects than other ones.  I am planning to call my UCSF oncologist Friday (hoping she will return my call) to see what she has to say.  I don't want my Monterey doctor to think I am going over his head for he is very nice and caring.  It seems like most of you who are on and have been on this same treatment, have stopped after 8 cycles or am I wrong?
My white blood cells are low, but not too low to not have the chemo.  I have been taking Astragalus (460mg) a day.  So, don't know if that is helping the white cells just enough or not. 
This is my sleepless night (because of the steroids) but I think I might have stayed up long enough to sleep the rest of the night.  I will try it.
Best wishes to you.
Theresa

9

(9 replies, posted in Introductions!)

Thanks, for all of your good wishes.
I had another round of chemo yesterday, even though my white blood cell count is very low.  I asked the nurse how low is too low to have chemo and she said that they take in several factors - how the patient is feeling, looking, and the side-effects  the person is experiencing along with the count.  Next week is my off week so I am really ready for it.  Of course, today I felt good because of the steroids, but tomorrow and Saturday will not be as good and fatique will be back, but Sunday, I will be ready for church and taking it easy and enjoying the next week. 

Joolz, don't give up hope.  You will find out from this Board that the doctors do not know everything,   We need them and there are some very good ones, but they do not have a crystal ball.  Prayer is very powerful.

Best wishes to all of you.
Theresa

10

(19 replies, posted in Introductions!)

Hi, Brad,
I have just started reading LIFE OVER CANCER and I am curious what you thought of the Block Center.  You said that you did go there.  Do you think it helped you?  I will be finished with my second go around with chemo next month and I was just wondering if I should look into some place like the Block Center.  I would appreciate knowing what you thought about the facility and what they have to offer.

Theresa

11

(17 replies, posted in Members' Cafe)

Andie,

I don't know what to tell you to do about your trip but I will tell you I am having to fight with Access America to get a refund.

We booked a trip last March when I was on a hold pattern.  The last payment was not due until the last of July at which time the Insurance was due.  THEN the middle of August I started chemo but it was going to be two weeks on and one week off so I felt that I could still go.

Then in September, the doctor and I decided it would be best if I did not go so before the start of the cruise we cancelled the trip.  At first they said we did not pay for the insurance soon enough.  We went through a travel agent so he stepped in and said it was paid on time.  Now, they are saying the papers were not sent in in time.  More papers were sent in and now they are saying they can not read the papers that were faxed to them.  Last week, I mailed more papers.  This has been going on over three months.  I don't hold out much hope of getting our money back, but I will keep fighting. 

I am just passing on my experience with Access America.  I will let you know
my outcome.  I just wanted you to know having insurance is not an easy way to get your money back.

Best of luck to you and I wish your Dad the very best.

Theresa

12

(19 replies, posted in In Remembrance)

Cyndi,

This is not what I wanted to see when I logged on to the board just now.

I am so very, very sorry.  I will really miss her  She was so young and had so much to live for.  Your family and Kevin will be in my prayers.

Love,
Theresa

Cyndi,

I am so sorry to hear this news.  I have gotten to know Linda through our e-mails   She is one amazing person.  I got to talk to her the other day and she sounded so strong and was glad to be at her mother's home.

Please let her know that we are all thinking of her.

She will continue to be in my prayers.
Theresa

14

(9 replies, posted in Introductions!)

I have been putting off posting until I had some positive news.

I started an 8-cycle treatment of Gem/Cisplatin the middle of August and today I am on the beginning of #7.  I have tolerated it very well.  Just a little nausea and fatique. 

Yesterday, I had a CT scan which I have been anxious not knowing if this chemo is working or not.  The doctor was very optimistic when I saw him today. He said that even though, it did not show the shrinkage that we would have liked to see, it did not show any growth nor new tumors. so, again, being stable is good.   My blood test looked good with the liver enzymes within range and even though the CA-19 marker is high it is going down, in the right direction.

So since I am still feeling good and have no pain, and have stopped losing weight, he thinks the combination is working.

There are others like me who were given a few months and now it has been 18 months ago that I was diagnosed. 

It is so good to read about those of you that have good news and what you are doing to fight this terrible cancer.   Thanks, for sharing.

I am so sorry to hear about others who have lost their loved ones to this cancer.  I keep praying that a cure will be found in our life time.  That would be wonderful.

Best wishes to each of you.  This board is a great support.
Theresa

Shari,

Sorry, you hit "a bump" in your treatment.  I am on the same chemo as you and Wednesday I will be having Day 1 of Cycle 7 if white blood cell count is high enough (leaving only 3 more to go).  I have had to take 3 little nausea pills and have had some fatique .  My hair is still thining but the doctor said I shouldn't lose all of it.
.   At first I had some discomfort with my port, but now, I am so glad that I have it.  I don't know about you, but I seem to feel the worse the 3rd day after chemo.  But I am sure each of us have different  degrees of the side-effects.  My oncologist told me that this combination  seem to have fewer side effects than the other combinations.

Stay positive.
Theresa

Patti,
So good to hear that you are a 3 1/2 year survivor.  Thank you for sharing this news with us.  I have read some of your old postings and really appreciate you coming back on the board to let us know how you are doing.  I would like to know if you are taking any supplements and if so, what are they? 
Also, I was wondering if you have a stent in the bile duct to keep it open.

Happy Birthday and many many more to come.
Theresa

Good Morning to each of you,
I agreed that shrinkage is great and stable is pretty darn good.  My last CT scan showed that my cancer is stable and I will have another one the first week in January.  I am praying for more good news.
It's wonderful to be celebrating another Christmas with my family.  And as you said, Julie, we are in God's hands.
Merry Christmas,
Theresa

Christie,
Sorry to hear about your mom.  Last September '09, I had a low dose of Gemzar and radiation.  I started an 8-cycle of Gem/Cis in August '10 and should complete it the first of February.  I am tolerating the chemo as well as expected.  I do get tired by evening, but I am able to do whatever I want to do.  I am retired, so I do not work outside of the home.  The oncologist said that  if this combination did not work, that we would try one of the others that you mentioned.  It has lowered my white and red blood cells.  I was given iron the last two visits so they are hoping this will help with the fatigue.  I have read that too little iron is not good, but that you can have too much and then it is stored and that is not good, 
My CT scan (Oct 29) showed that the tumors are stable and I will have another one, the first of January.  My CA-19 blood test count is coming down since I started the chemo, but it is still very, very high.  But all in all if this combination works, it is well worth the side effects that I have had.
Best wishes to you and your mom.
Theresa

Linda,

So sorry that the Mayo appointment was not what we wanted to hear.  Glad that you are not going to lay down but keep looking for another opinion.  Will you have to wait for the insurance approval before you go to Loyota?  I was given hydrocodone (generic for vicodin) for pain.  It worked much better than Tylenol but it was very constipating.  Be sure you take stool softeners right awa, which I learned the hard way.  As far as changing oncologists, I know it is a pain looking for a new doctor, but don't wait.  You need a caring doctor and the sooner you find one, the better.

You will be hearing from me soon.
Theresa

Hi, All,

Just a little update on my Gem/Cis treatment.

A couple of weeks ago, I had a CT scan and saw my UCSF doctor last Friday and had my chemo treatment today at my local oncologist's office.

Marion, I asked about lowering the dose and the answer I got was that since this dose seems to be working, they did not want to change it for now.

The CT scan showed no shrinkage in the cancer, but it, also, showed  no growth or spread.  The tumor markers (CA19 and CEA) were both down.  Not as low as it was before I started the chemo, again, but they have come down (but they are still "sky-high").  So, I am glad to get all the positive results, I can get.

Today, I am half way through my treatments, twelve more weeks to go.
I am on two weeks on and one week off.

Not sure if I should go back to bed since I have been awake for for 5 hours or just wait until evening.

Devoncat, I am not having the weigh gain with the steroids, but on the day of chemo, I am lucky if I get 4  hours sleep that night.

Best wishes to all of you.
Theresa

Just-Jill,

I may not be much help.  I have Medicare as my primary and BC (Anthem) is the secondary.  I have a PPO and it is costly, but so far, I haven't had too much trouble with them paying for my scans which has included a PET.
Sorry, you having trouble with the insurance for you do not need more stress.

Theresa

Margaret,

I know you asked Cindi about the telephone number, but in case, she doesn't have it.  I do.  I called 800-258-7677.  I called and they were very helpful.  Enlive is not sold in stores but you can buy it from Home Deliviery or on line at Abbottstore.com (I am not sure if it has one or two ts)  If you call this number they can give you all the information where to buy it.  It has 250 calories, 9 grams of protein, 32 gm of sugar.  (that's all I wrote down).  She said since I was concerned about the sugar content, that I might want to check out Glucerna which is sold in stores. 

Hope this will help.  Like, Tom, I don't need to lose any more weight.

Theresa

Cindi,

Sorry, I have taken so long to thank you for your reply.  I must have missed it. Thank you for replying.  I did call Abbott Labs and get the information I wanted.
Like you, I do not think one nutrient is going to control the cancer cells, but I do try to watch what I eat, urban myths or whatever.  And like Richard, I can not afford to lose any more weight.  I find living with CC is a continuous  learning experience, and I appreciate all the information that I can get. 

I hope Richard is feeling better since your post  and that he will continue to
improve.

Theresa

24

(80 replies, posted in General Discussion)

Rick,

As I posted earlier today at the site of Gem/Cis, I am now taking this combination,  with very little side-effects, so far.  My doctor is giving me this instead of Gem/Oxali because he says there are fewer side-effects.  So hopefully, you will find this to be true, too.

Theresa

Hi, All,

Kathy and Rick, being in the same "boat" with you, I am always anxious to hear how you are doing.  Even though, my white blood cells were down on Wednesday, I still had the regular dose of Gem/Cis because I will be off a week.  It went very smoothly.   
Marion, even the port is getting better.  At least, now it is better than using my veins.
Kathy, unlike you, last fall when I had the radiation and chemo, I think I took it much better.  Could have been because I had more weight, but this time, I am getting  fatigued.  Last time, I had to have the Neupogen shots, so the shots and being nauseated were the worse part of it.  And, too, they cut my chemo dose very low, starting out at 600 down to 200.
This time, I am still on !400 Gem and 40 of Cis. 
Kathy, only two more cycles!!  That's great, and we want some good news.
Rick, I hope your treatment went smoothly this week.  Like Kathy, I am taking it very well (except getting tired in the evenings) and hope that you won't experience the side-effects, either.
Let's have a good week-end and look forward to a good week.
Best Wishes,

Theresa