hi all,

the latest news about my sister:

roughly 2 weeks after the end of the first round of chemo (combination cisplatin, dexoteris, 5FU), her oncologist told her yesterday that the treatment doesn't seem to be working on the new tumour. no hard tests have been done to validate this. she's supposed to see him again on friday to discuss treatment options. meanwhile, we are still trying to get her into City of Hope, though we seem to be stuck in a bureaucratic maze at the moment. she's lost more weight as a result of chemo. feeding continues to be a problem as she can barely tolerate food in her stomach. she's generally pretty weak though she seems to be on the up now that she's at home. she and all of us with her are struggling to not be disheartened.

more questions:

- what kind of tests should be done at this stage to determine whether or not chemo has been working?

- they gave her a lower dosage of chemo drugs because of concern for her general state of health. should a higher dose be considered now?

- what might be other treatment options? should a second surgery be considered at this point?

thank you for any and all advice, counsel, hints and tips.

be well.

gita

I'm sorry no one responded to your post. That's very rare here.

I had a CT done to determined if the chemo was effective. Also CT/PET seems to be popular right now.

The other questions I would have to refer to a physician. When in doubt get a second opinion. Sounds like your doing that. Good luck on getting in at City of Hope.

Lynn

Dear Gita,

I'm sorry your sister is going through such a tough time. My husband, Scott, had a recurrence the size of a small orange under his right jaw/ear area. Docs used chemo to try to shrink it because it was too large for surgical removal. He had already had radiation to the area with the first diagnosis so that was not an option. He was on cisplatin, 5Fu, and docetaxil. When the docs saw that this strong chemo mix wasn't working to shrink the tumor (by comparing CT scans) and that it was only making him weaker and sick, they went ahead and performed a huge surgery on him.

I hope your sister's doctors are being up-front with her. You said she has been on combination cisplatin, dexoteris, 5FU; those are some hefty chemo drugs they have thrown at her. Whether she gets in at City of Hope or stays where she is, she (or you) should ask tough questions about what this all means. Our doctors did not volunteer even half of what we needed to know to take part in the decision-making process.

I wish I could be of help. I can only say that my thoughts and prayers are with you and your sister.

Christine

I also meant to say that you are doing a wonderful thing by helping her and being so supportive. Bless you for going the extra mile to help her get more information.

C.

Gita,

Sorry I missed your post the other day. I have found that if you can't go through all the new posts at once, you may not get to some since they are all updated as being "not new" when you exit the site.

By now you probably have received treatment options from your siter's medical team. I am not sure if any tests at this point would be conclusive and I am not sure how the doctor would know if the new tumor is responding or not.

There are some options on the nutrition side that would help her body tolerate the chemo. First, if she has some type of central access (i.e. mediport, PIC line, etc.) the doctor can order TPN feeding with a targeted caloric intake. It is usually administered over 8-12 hours via a pump and can be done easily at home. Second, if the chemo was reduced because of blood count issues, there are drugs to boost the production of white blood cells (Neupogen) and red blood cells (Procrit). They are both quite expensive and the doctors may be hesitant to prescribe.

I hope you are taking some regular time to wind down yourself. Things are getting pretty tense by now, I assume, and may even get worse as you try to help your sister battle this horrible disease.

I don't know if any of this helps but I will pray for comfort and healing for your entire family.

Ed

dear all,

thank you so much for your replies. so much of this battle is fought in the dark, it seems, and it is very helpful to hear from others who know the territory.

my sister is currently getting her second round of chemo at the same hospital and we're still waiting to get her into "city of hope." it turned out that her oncologist was wrong in saying that she had not responded to chemo! we insisted and pushed for scans as the tumour had visibly gotten smaller, so between tuesday and friday, he changed his assessment 180 degrees.

i've ranted in another post about how frustrating and psychologically taxing this was, specifically so because it made us realize that what we do in advocating for my sister and how much we know about processes and protocols can make huge differences in how she's treated. i admit that i find this to be quite a heavy burden added on top of the sadness and pain we experience at seeing someone we love going through this ordeal. but enough venting.

ed, thank you for the info about the drugs. i've communicated that to my family in los angeles, and will follow up when i go there myself tomorrow.

be well.

gita

Gita,

I am glad to see progress with your sister! I know it somewhat lifts your family's spirits as well. Yes, this process can be frustrating and exhausting. Be greatful you have the spirit and the knowledge to guide you. A dark path can only be visible in the light. Above all, keep feeling and sending the love.

Ed

Hi Gita
You are doing your sister proud lady.. hope if I need someone in my 'corner' they are like you..
sunshine.. love and hugs
Helen