Topic: Stable - its not great news but its better then the alternative

Well after our last visit with the new oncologist we have been informed that my sisters cancer is considered "stable" 
While its not great news, its much better then the alternative. 

Her ca19-9 continue to fall.  She's come down from 14,651 to 583.  Of course the doc's all say not to read too much into those numbers, but its hard not to.  At least there going in the right direction. 

The stop short of telling us that her cancer is shrinking but the whole "Stable" thing is really positive for us, or at least we think it is. 

Her routine of Gemcitabine and Oxlaiplatin have not been changed, her dose of Ox however has been decreased by 20% because of the neuropathy in her feet.  Hopefully the decrease will not allow things to begin moving again. 

Just wanted to share the news.

Re: Stable - its not great news but its better then the alternative

You are so right. It is not traveling upward!! That is good news and we will take that any day. smile:)

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Stable - its not great news but its better then the alternative

Stable is great news...as is the falling numbers. That is all encouraging. Hopefully next time, they will see some shrinkage.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Stable - its not great news but its better then the alternative

Stable is great news. My Mom's first evaluation was stable and her next evaluation three months later showed ALL tumors shrunk 50%.  Hopefully your sister will be on the same path. 
Prayers and good vibes your way!!

Re: Stable - its not great news but its better then the alternative

I agree....STABLE has taken on a great new meaning. Congratualtions are in order.
I am thrilled for you.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Stable - its not great news but its better then the alternative

Hi Damamma,

Thanks for letting us know about your sister and her latest evaluatuion from her onc. Stable is indeed good to hear and hopefully we will hear more about shrinkage from her next visit.

Best wishes to you and your sister,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Stable - its not great news but its better then the alternative

Thanks everyone.  We were pleased to hear as well. 

Her regular Oncologist has left our seriously underserviced city and moved on to Research.  We are left now with only two Oncologists for a city of nearly 80,000.  My sister didn't see her new doctor yesterday only a nurse for her pre-chemo screening.

Her platelets are low, might be too low for chemo this week.  I guess we'll see today.  Not too happy about that but I guess after all this time on chemo it was bound to happen. 

Thanks for all the encouragement guys.  I wasnt' sure if we should be excited by the news of Stable but now by reading all your responses I'm feeling pretty good about it.

Re: Stable - its not great news but its better then the alternative

Stable is GREAT! Stable is fabulous!! Yayyy stable!

My tumors were stable for 3 years, and I enjoyed every single minute, and am hoping for stable again before too long.

Peace, hope, and healing to all!

Re: Stable - its not great news but its better then the alternative

Well how about this.... her platlettes were 96, at her last chemo, this week they were up to 140.  Perhaps cutting back the Oxlaplatin by 20% has helped. 
Now we just need to find her some relief for her feet.  sad   Any suggestions to help with the neuropathy? 

We went to see Cats last night, took our mother for mothers day, by the time it was over her feet were really painful.

Re: Stable - its not great news but its better then the alternative

There is some vitamin or mineral supplement that is supposed to work. Is it magnesium? Someone help me remember.

I talked about with my doctor but I cant remember her reasoning why we didnt use it for me when she had used it with other patients. This is going to bother me. If I remember, I will go through my notebook and look. Cant promise anything since my memory is going, going, gone.

I do know that for me, the neuropathy increases if I am dehydrated. And that it clears up significantly after a couple of months off chemo (for me at least)

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

11 (edited by marions Tue, 01 Jun 2010 10:02:12)

Re: Stable - its not great news but its better then the alternative

In my interview with Dr. Gorter he had mentioned the following re: neuropathy:

"Xeloda does have minor side effects such as loose stool but the significant side effect is proriphial neuropathy which can practically be prevented by the increased intake of alpha-lipoic acid.  You can counter this side effect by taking 600mg of alpha-lipoic acid which essentially, is a fatty acid.  However, you cannot take alpha-lipoic acid during the period of the intake of Xeloda since the effect would be inhibited, but in many instances neuropathy can be prevented by taking alpha-lipoic acid during the two-week break."

I hope this helps
Best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Stable - its not great news but its better then the alternative

Thanks Marion. Now I dont have to drag out the notebook.

Here are some abstracts on neuropathy and cancer from pubmed
http://www.ncbi.nlm.nih.gov/pubmed/15590869

http://www.ncbi.nlm.nih.gov/pubmed/19816592

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Stable - its not great news but its better then the alternative

Thank you both Marion and Kris.

I haven't had the time to research prevention or treatment of side-effects, so this had really helped.  I need to manage my time better!

Thanks again,
Linda Z.

"Life is not about waiting for the storms to pass...
it's about learning how to dance in the rain."

Re: Stable - its not great news but its better then the alternative

Linda....let me know when you have conquered the time management issue.  I will line up to learn from you. 
By the way, I will be in Chicago for ASCO until Tuesday.  Is there a chance for you to meet up with us?  Barbara and her Mom, and Patty will meet me on Sunday.  I will ask Darla also.
Best,
Marion
Best wishes,

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Stable - its not great news but its better then the alternative

Marion,
I don't know about you learning time management from me!  But I'll let you know when I get it down, when I get time!  Don't hold your breath though, we need you too much here!

I would absolutely love to meet you guys.  I am trying to work out some time for it.  About what time on Sunday are you thinking about?  My husband has a short visit planned for us to meet a friend of his in Des Plaines (that is very near O'Hare Airport), so maybe I can leave from there.  Will you be at the Sheraton?  Des Plaines is about 30 mins. from the Sheraton.

Let me know so I can give you a definite answer.  I sure hope our schedules work out.

Linda Z.

"Life is not about waiting for the storms to pass...
it's about learning how to dance in the rain."

Re: Stable - its not great news but its better then the alternative

Marion: Have a wonderful trip and PLEASE give Barbara a kiss for me and tell her I do miss her!!!  But I totally understand. I hope you can get to meet Darla and Linda too. I am so envious!!!! Enjoy.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Stable - its not great news but its better then the alternative

Hope you have a great trip Marion and I am looking forward to reading your report on the ASCO conference. And I hope that all of you that can meet up with each other have a great time!

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

18 (edited by Linda Z Sun, 06 Jun 2010 07:51:34)

Re: Stable - its not great news but its better then the alternative

Marion,

I didn't see another post from you here regarding your trip.  I'm just assuming that you left soon after your original post and wasn't able to see mine on Friday afternoon.  If you still have plans on meeting others, let me know.  I'll be home and can ck for messages here until noon and could be available from 3:00 on. 

Hope you are have a great trip so far and that it continues.  I look forward to hearing about the conference.  (by the way, I didn't know how else to contact you, so I hope that you find this follow-up).

Thanks,
Linda Z.

"Life is not about waiting for the storms to pass...
it's about learning how to dance in the rain."

Re: Stable - its not great news but its better then the alternative

Thanks everyone.  I will give a full report, soon. 
Linda, you are right.  I did not read your message until now.  I will e-mail using the address provided by you.
It would be fantastic if we could meet. 
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Stable - its not great news but its better then the alternative

Thanks for the info folks.  I'm passing it along to my sister. 

We saw yet another different doctor today..  He's a locum just helpin out in our cancer clinic. 

My sisters feet are becoming a real problem, he suggested that since she's been on the regiment of Gemcitabine and Oxalaplatin for 8 1/2 months, every-other week, that its time for her to take a break.  That scares the crap out of her, me too.  She told him she was afraid to stop and he's suggesting that perhaps she could go on a strictly Gemcitabine protocal. 

She's to have a ct on the 15th and see the doc the 21st or 22nd.  Hopefully we'll have good news then.    sad

Re: Stable - its not great news but its better then the alternative

Damamma....we have seen this on the board, quite frequently, that the doses of therapy have to be lowered due to the debilitating side effects.  It might be advisable to consult with another physician.  We can never have enough opinions coming our way.
Best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Stable - its not great news but its better then the alternative

We have such a terrible shortage of doctors here in our little city.  We've just lost another Oncologist and the two remaining are dealing with a city of 80,000 people.  This appointment was changed 4 times in the last two weeks.   Grrrrr. 

She will be having a new CT next week, and is supposed to be seen before her next chemo treatment, to find out the results and to see what the Doctor actually assigned to her case has to say about the situation.

Re: Stable - its not great news but its better then the alternative

Damamma....I have heard this before.  In fact, last night it was mentioned at the ASCO conference that there will be a severe oncology shortage within the next few years.
Good luck and best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Stable - its not great news but its better then the alternative

Yesterday wasn't a very good day.   It was determined that her port (which is only a couple of months old) is no good.  She had to have the Gemcitabine via IV and the temporary doc would NOT allow her to have the Oxaliplatin.   She has to wait to see if the Surgeon will re-install a port for her.  She really does not want a pic line.   The temp doc also gave her a prescription for Lyrica to try and help with her neuropathy.