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Posted

I just went to the oncologist with my mom to go over her CAT scan and bone scan from last week. The doctor said no new growth is good but he would have liked to have seen some reduction in any of the tumor sizes. He said her liver is not as enlarged as it has been and the numbers have went all the way down to normal functioning but she still has the five tumors, one of which is 6 cm. Her platelet count was low and he said if it continues to go down she might not be able to get the 2nd part of the fifth chemo. (She got the lst part of the chemo after the appointment).

I don't know what to think. I am happy that there is no new growth but scared that the cancer is still in all the other places without disappearing or getting smaller! My mom is getting Zometa? for her bones and Procret for the fatigue too. The doctor said that 6 rounds of this chemo is what is shown to be effective but she could do more if she was happy being stable. I am so confused! Do people really have it in all those places and stay stable? I'm trying to prepare myself and give my mom hope and strength but it is difficult and I feel very lost. My Dad doesn't really understand what the doctor is saying either because the doctor said he has one stage 4 patient who has made it almost 4 years switching chemos.

I read this sight daily and have become consumed with the peoples real life stories and am really, really, really scared of how my moms story will end.

Thanks for listening.

Posted

Hi Trish

I think that when patients are in the treatment phase, we are so desperate to hear the word 'shrinkage', and so fearful of finding new growth, that 'no change' puts us in kind of a limbo where we don't know what to feel. I know with my Mum, I was always disappointed initially to hear the word 'stable', but it is SO much better than the alternative (growth), that I have learnt to be quite grateful for it. Mum had some initial shrinkage with her chemo, and had no change from her scans in April (I think). Who knows how long stable will last?? When considering how long to continue with chemo, you need to look at the effect it is having on the immune system, as well as on the cancer cells. I think that's one of the hard things about this disease - there are always difficult decisions to be made, with no clear-cut right or wrong answer.

I hope that your Mum continues to experience stable disease, and that her next line of treatment produces that much sought-after shrinkage!!!

Karen

Posted

Trish,

I have to read between the lines here a little bit and kind of guess, but I'll give you my first reaction. But, please remember, it's just a guess.

It is good there is no growth, but I think that with the administration of chemo, they really like to see at least some shrinkage, especially since she has a 6 cm. tumor in her liver. I'm sure they would like to see that troublemaker lose some of its size. This is probably one of those things where a tough decision is in order. Do I settle for stable? (the chemo is holding down the cancer) or do I try a different chemo that might be more effective in destroying more of the cancer (or not)? It's a tough place to be in.

I know this isn't much help, hon, but it's the best I can do with the little I know about it.

Please let us know what she decides.

Much love and many hugs,

Peggy

Posted

Hi Trish

I know how you feel as I go through the same feelings with my Mum. My sister is karenl, and she explained exactly how I feel too.

Stable IS good. Shrinkage is better, and NED is the best. Hopefully stable is just the first step in the progress to NED. My Mum has told me that if she remained stable as she is now (with a tumour in her lung and secondaries in lymph) then she would be happy as she is symptom free and otherwise healthy.

Jana

xxx

Posted

SADLY, WE MUST EXCEPT THE LITTLE VICTORIES, BECAUSE WE DO NOT ALWAYS GET BIG ONES RIGHT OFF. STABLE IS EXCELLENT. I WOULD LOVE TO HEAR DISEASE FREE, OF COURSE, BUT STABLE IS A STEP CLOSER, NOT A STEP BACKWARDS. HANG IN THERE....

Posted

Trish,

There's a woman in my oncologist's group who has been on and off chemo, to remain stable, for over 11 years. Stable enough buys time for the new chemos to come out. She's still waiting for NED, and she might just get it. Meanwhile, she comes in for her chemos and goes about her business. Her longest stable spell without chemo was almost one year.

Adjusted thinking, I know. But if it works....

XOXOXOX

Prayers always,

MaryAnn

Posted

MaryAnn hit it right. More time means more options. My neighbor's son died of AIDS 6 months before Protease Inhibitors made AIDS much more a chronic illness. One other thought. Steve has had 2 PET scans. His onc. told him that sometimes the tumors remain but are necrotic. Maybe a PET scan could give your mom more information to make her decision.

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