Where I am at now

I think waiting is one of the hardest things we have to do in the struggle with cancer. We have waited for cystos, biopsy results, treatment results over and over again. i don't think we ever get used to the waiting. Now waiting for the results of future CT scans just doesn't seem like we are doing anything.
I think you have the right idea Susan in using the time to enhance your immune system. It is hard to sort out the best information from what might be only anecdotal.
Speaking of bone marrow, one of my husbands other diseases is a bone marrow disease and we are waiting to hear if he is approved for medication to treat it instead of relying on Procrit. Julie

To Holly and Daisy Bear -- I identity with the feelings you express about times of
no treatment. To me, such times feel as if we're letting the cancer take its course unopposed. And in my case, during one such time, my second and subsequent mets appeared; the doctor said, though, that (judging for size and number) they'd already been there but not clearly visible.

My next planned treatment is in May. To be clear, I asked if I could delay until then, because once I finish this academic term of teaching I can retire with health benefits (if I have to; good chance I'll "have to.") The (new) doctor at MD Anderson did some tests. Before the tests he was reluctant to say delay was OK.
After the tests, he said it was OK and if I had trouble between now and May, they could "give me something" to get me through the term. (I know I should have asked "what" but I'm not always that quick in responding after processing. I'll try the secure email network there after the fact.)

I know I can't have it both ways -- have continuous treatment and wait until I'm
retirement eligible to pursue treatment away from my work site right now. I
am convinced I should have the new treatment in Houston rather than over here because they are far more experienced in this treatment and its side effects than are doctors and hospitals over here on the Mississippi Gulf Coast. If the doctor had said "we need to start this now" I was prepared to comply; but that's not what he said.

Sorry this is so long, but what I'm planning to do between now and May is do whatever I can to fortify my immune system in anticipation of treatment with
Ifosfamide (and perhaps other treatment components). I'd be interested in any
information forum members may have about things to do to fortify the immune system.
I know the question has been asked before in other ways, so I'll search, too.
One of my issues (that I do not think Holly and Daisy Bear share) is that I have
had radiation treatment and "lost" about 8% of my bone marrow (if I understood
the doctor correctly.)

In support -- Susan

holly

Just wanted you to know that you are not alone, I too seek answers to what is actually happening to my body and no one seems to have a clear answer. Which clearly sucks!!! dealing with this rare cancer is so much harder, it doesn't give us much to hold on too. But you have me and I hope that we can fight this together.

My lastest Ct scan showed I am stable, but the ovaries have been showing some Kind??? of disease??? is what they can only tell me for sure. But I have been telling them something was wrong back in Jan. and thats when they ordered an ultra sound and found big masses on the tubes. I will need Ct scans every 2 weeks rather than every month. The trail has had it's ups and downs with my liver levels going too high and I was taken off for a weeks rest. things came back up(JUST)This is my 3 cycle and I will get a Ct scan this tuesday.

Has anyone offered you any other treatments or are you still looking for a second opinion? I don't know what I would be doing if it wasn't for this trial. My mind goes crazy if I am not doing any treatments, I just want to be one step a head of it for once!!!!

Keep me posted

think of you often

daisy bear

Dear Julie,

I also hope Dick never has to deal with bone mets either ! It seems there has been more than enough for you guys to overcome without that!

I must admit when it comes to understanding what we eat - I have been massively ignorant my whole life. Until I hit 41, I was a size 0-3 who never feared a calorie. And my blood pressure was always low - numbers like 88 0ver 58. Now I am 20 pounds heavier and my bp numbers usually 110 over 70. My diet currently has no refined sugar and very little "sugars" in it. I will definately read up on carbohydrates and the like!
Thank you, God bless, Holly

Hi,

Dear Melody,

Thank you for the prayers. All in all, things are good. Last year my faith was greatly increased with all we go thru to survive this cancer. Other than hip and bone pain I feel better than I have for almost the last year and a half. I have faith we will get thru this and that I am not alone in it either. God Bless, Holly

Holly, You sure do have many issued to grapple with. I do not know anything about bone mets and hope my husband is not visited with them.
I do know something about diabetes and renal insufficiency as Dick has both and I have a sister-in-law who will have to go on dialysis sometime soon. Dick's renal problems do stem from diabetes and the best advice he got was to keep his blood glucose levels as normal as possible without going low. To keep his cholesterol low and his blood pressure low. High blood pressure also adversely affects the kidneys. The best way to stave off diabetes is to eat as if you were diabetic. Diet advice these days for diabetics is to count carbohydrates and eat a balanced diet of mostly vegetables and fruit, whole grains and 5 - 6 ounces of protein a day and to eat small meals 5 times a day instead of 3 larger meals. Also if you can walk try and walk at least 2 miles a day.
Julie