Topic: Update - Need Help

Hi Everyone,

My mom who is 46, diagnosed with ICC in December has been on gem/cis between January until the end of June. Since then, she has been off as the chemo began to feel overwhelming and really made her fatigue and frail. Having said that, she decided to become a vegetarian and has lost about 15 pounds between the end of June and now. We saw her oncologist last week and he believes that the cancer has become active again because of her symptoms; weight loss, constant burping, very fatigue, muscle pain etc. I am not sure what to think because based on her last scan in July the cancer was stable (it had shrunk from 9cm to about 5x4cm and other liver tumors had dissapeared or were at 1cm with some lymph node involvement). I know that many people have the cancer return, grow etc, so I'm curious to find out whether or not anyone has experienced these symptoms and if this very alarming? Please keep in mind that the weight loss has probably a lot to do with the fact that she has gone vegetarian and was experiencing some nausea, vomitting throughout the months she's been off chemo because of some of the pain meds she was taking. The doctor prescribed last week 4mg of dexamethesone (once a day) to help her with her energy and it has actually improved her ability to do things and eat significantly (considering she was doing so well on chemo, it was when she got off that she started experiencing all these problems).

The doctor has recomended that we meet with palliative care and so we have an appointment set up in October, it was a little scary to hear those words but he re-assured us that he is not writing her off, he just wants us to have the ability to seek medical attention at home when she has pain or other concerns (she is very stubborn and hates any form of medication, doesn't like going to the ER etc). I am hoping to god that if the cancer is active that it hasn't necessarily grown significantly in the last two months, but I know how tricky it can be, I also worry that it might have spread somewhere else but I TRULY hope that is not the case. If anyone has any experience with the symptoms above please let me know, the doctor said that if the cancer is growing he would put her on Xeloda which makes me nervous as it is a new chemo. Any input would be appreciated, she is a widow and I can't imagine being without her. My brother and I are both fairly young and we are desperate to keep her around, she's our angel smile

Re: Update - Need Help

Dear Milenzz, I am terribly sorry to hear of what is happening with your Mom. I am very curious as to what the ONC said about going vegetarian? One needs something from all the food groups in order to keep up their energy and strength. A suggestion would also be Vitamin B12 injections like once a month, my husband took them and they really helped. Did the ONC do a new Scan to help determine where she is at with the CC? This is some serious stuff this crazy CC and I am not sure how he can determine if it came back or not without a scan. Most importantly you might want to consider a 2nd opinion. Some things don't make sense to me. Like burping could be from the chemo and she may need an acid reducer that you can get over the counter. Did the ONC change her pain med? I am so sorry but my gut is telling me something is not right here and I am hoping you can get another opinion. One last thing about pain Meds. If she is in pain and does not take something to control the pain, it will be harder to control later. Please consider another opinion and please keep us updated as we truly care.

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: Update - Need Help

Hi,
I am a patient of ICCA for 54 months now. I am 63.
Like your mother, I do not like the side effects of chemotherapy;but Xeloda by mouth twice a day;14days on and 1 week off is a relatively easy to take and the side effect is much better than GEM/CIS. I was on Xeloda for 14 months or so without difficulty.
For multiple tumors in the liver, radioembolization is one of the method to extend and provide quality of life to your mom. Cryoablation can be done to control the lymph nodes IF NOT too big and too many. Systemic chemotherapy ,however, will provide better overall coverage of controlling both the tumor growth in the liver and in the lymph nodes.
I do not know whether those interventional radiology(IR) procedures are available thru  Public Social Health systems, but you can ask the oncologist to get you a referral to see them I guest.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Update - Need Help

Milenz...I would like to follow Lainy and Percy and welcome you to our site. 
Palliative care encompasses many things.  We must remember that it can include end of life care but is not inclusive to just that.   Therefore, please don’t let the definition of palliative hinder you from obtaining other, medical opinions.  The true “cure” for this cancer can only be achieved by a successful resection; everything else is considered palliative.  But, that does not mean that patients can’t live with this cancer similar to that of a chronic disease.  And, given the increased focus on this cancer, positive things may very well evolve. Therefore, one would want to research all options available including, radiation i.e. interventional radiation, etc. in order to assure that the most available treatments are implored to the fullest.  Knowledge empowers us to make informed decisions. 
I am glad that you have found us.  Count on the caring members of this site to stand by you, help you understand and support you.

Hugs,
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: Update - Need Help

Hi Milennz,

I am not familiar with the Canadian protocol as to how, but I suggest you start looking for a new Onc, at the very least to get a true second opinion.

And if that is not an option, please ask the Onc to get a new CT scan to verify the situation.

All the symptoms you described, my wife has. And she, too, has moved to be a vegetarian - not fully but most of her diet is now veggies, fruits, nuts, and beans. And her CT scans have shown improvement while going through this change. She, too, has lost 15 pounds. Actually more.

However, she does add protein with chicken (organic) or salmon (wild only). Even if you mom is completely vegetarian, the real topic is making sure she gets her protein. And that could be in supplements.

Also, every person with this disease who cannot have surgery is - please others correct me if I am stating this wrongly - in palliative care. We are. And that's OK. Palliative care means, in my opinion. at this point in time, the cancer is not curable but it can be managed. You know what, I am good with that.


Hope that helps,
Carl

Re: Update - Need Help

Thanks everyone for your support. My family and I are actually very pleased with her oncologist, he is one of the best in the hospital my mom attends and is very caring, sensitive to her needs, and fairly knowledgable. Having said that, I forgot to mention that he ordered a scan last week, it will be taking place on the 24th of September and we will be reviewing the results and possibly starting Xeloda on the 26th. The reason he thinks the cancer has become active again is solely due to the fact that she posseses the above symptoms and because one of her liver functions was elevated (it is in between where she left off when she finished chemo and her initial diagnosis) which is a little worrisome. Also, even though she was a vegetarian, she has now began to eat organic chicken and wild fish - just as Carl mentioned in his post in order to strengthen her body and immune system.