My Mom, Rosalinda, succumbed to this dreadful disease yesterday early morning. Please say a little prayer for her.

God bless everyone.

Thanks,
Lorraine

Hi,

Thank you all for taking the time to share your insights. Everything is appreciated.

My Mom starts chemo next week. Kris, I'll make sure that she's kept warm (with mittens, thick socks and scarf).

God bless us all!

Yesterday, we received a very depressing news. My Mom had her CT scan done 3-months post- Y-90 treatment. Her disease has progressed or accdg to her Onco is worst...they were discussing about portal vein thrombosis.

My Mom was given 2 choices:
1. Another chemo treatment: Oxaliplatin and Xeloda for 6-9 weeks then CT scan
    The Onco told us that there is about 1:4 chances that this combination will help shrink the tumor/PVT. He's not really positive about this because the Gem/Cis, the first chemo combination that she had taken, didn't help shrink the tumor. It actually got a little bigger.

2. Hospice

My Mom feels and looks better now that she hasn't had chemo in over 8 months. Very minimal abdominal pain (on Oxycontin) and better appetite (on Megace).

My Mom agreed to try this chemo regimen and may start in 2 weeks (awaiting for  insurance approval).

Just this evening, I was talking to the Onco over the phone, I asked about the prognosis. He  told me that if my Mom doesn't respond to this (to which he's not optimistic),  she only has 4-10 months to live.

With this, I'm beginning to have 2nd thoughts about this chemo. I know my Mom, though, she tolerated Gem/Cis with minimal side effects might not tolerate this new chemo regimen. I don't want her to be miserable...But, I want her to exhaust all medical/alternative options there are available before anything...

I am not prepared for this...

Please add my Mom, Linda, in your prayers.

Thanks.

I may have spoken to soon :0( Just this morning, my Mom started to feel that kind of abdominal pain again...but this time, it's in a different spot. The abdominal pain that she experienced before was more on the RUQ to middle (where the liver is?) of the abdomen. Now, it's more on the L side. She continues to take her lower dose of Oxycontin and with Oxycodone 10 mgs about 4 hours apart, as needed. She's already taken at total of 20 mgs. today. My Mom said that the pain would subside but not enough to last her more than 4 hours.

This has happened before and would only last for a couple of days. Maybe, my idea of lowering the Oxycontin wasn't a good idea after all. She was doing so well and now this...


I've called my Mom's SCCA Oncologist and waiting for a reply.

My Mom has a significant med'l Hx of:
1. Asthma
2. High cholesterol
3. Hypertension
4. Hypothyroidism
5. UTI

Percy, it's really hard to determine whether the side effects were caused by the chemo or Y-90? I believe it's more of the chemo that caused:
1. Anemia - My Mom received blood transfusion last October
2. Fatigue
3. Insomnia
4. Lack of appetite - My Mom's potassium level was low, replaced with potassium oral liquid
5. Nausea/vomitting
6. Shortness of breath, even with minimal exertion

Occasional complaints of lightheadedness and no edema noted. I'm not sure about her liver enzymes.

My Mom is slowly recovering from all of these. I believe the Remeron and Megace helped her a lot.

God Bless.

Hi Percy,

To anwer your questions:

1. My Mom's 68 years old when she had both Y-90 treatments done.

2-3. My Mom was on Gemcitabine and Cisplatin. I can't remember exactly for how long. I believe her first round was 2nd week of March  and last round was last week of April (or 1st week of May?). There were also a breaks somewhere in between.

4. My Mom underwent "mapping" sometime in June. The IR doctor didn't mention anything about the % of the leaking test for the lung. He just said that my Mom was a good candidate for the Y-9O procedure. 

Hope this info helps.

God Bless

Thanks Lainy and Marion...

Hi Willow, it's been 3 months since my Mom's last Y-90 (she had a total of 2, about a month a part, targeting 2 parts of her liver). The Interventional Radiologist at UWMC was very impressed about the results, based on CT scan 1 month post-Y-90.  We went to see her Oncologist at SCCA last Wednesday. Next CT scan of chest, abdomen and pelvis is scheduled sometime in January. He said that they'll decide from there whether my Mom still needs to do more chemo or not.

My Mom, though she continues to take Remeron and Megace daily, is doing great. Her abdominal pain is almost down to zero so we start to taper her Oxycontin dose.

I continue to pray for my Mom's complete healing. With God, NOTHING is IMPOSSIBLE.

Hi! My Mom was diagnosed with intra-hepatic CC last January 2012 at Providence Regional Med'l Ctr in Everett, WA. We were advised to seek a 2nd opinion at the UW Liver Tumor Clinic then SCCA. Because of the portal vein involvement, my Mom isn't a candidate for surgery. She did the gemcitabine/cisplatin regimen and Y-90 Radioembolization. It was the latter that helped reduce the size of the tumor (>90%).

My Mom is still being seen at the SCCA. I believe that my Mom is in good hands over there.

Prayers provided comfort and security in this journey. God is good.

Hi Davis,

My Mom had Y-90 treatments last July and September. No significant side effects except for fatigue. So far, so good...

I hope your Mom feels better.

Hi everyone! I just want to share the good news that my Mom received last Wednesday. 
My Mom had 2  Y-90 treatments, one in July and the other one in September.  Based on her latest CT Scan, her IR Doctor is very pleased with the results. According to him, more than 90% of her large tumor is dead!
Her next Oncology appointment will be in November. Maybe another round of chemo???

GOD is good.

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Thank you so much, Lainy and Marion, for taking the time to answer my question.

Lorraine

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My Mom has had two Y-90 treatments...the last being 9/17/2012. My Mom had a fever on the day of the treatment and slightly elevated WBC  but the IR doctor decided to go ahead and proceed. He did prescribe her Cipro to take for about a week.  My Mom has been having on (about 38.5C max) and off fevers/chills and she's been needing to take Motrin at least once or twice daily. My Mom says she doesn't feel any pain (takes Oxycontin 30 mgs. daily) nor unusual weakness. I notified the IR nurse and MD and said it wasn't really concerning as far as post Y-90 treatment is concerned.

Is this what they call tumor fever? Is it safe for her to take Motrin that long?

She'll be seeing her Oncologist on Oct. 10th...maybe another chemo regimen for her post Y-90 treatment.

Thanks in advance. God bless.



Lorraine

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Queenzerka, thank you for taking the time to reply to my question.  I'm still looking into it. I was able to find the dcasite.com website.  I sent "Bill" an email and still waiting for a response.

Should you be interested, one of the members of the site recommended a pharmacy based in Canada (Hollandview Pharmacy). They prepare dca capsules based on weight and dca mgs. dosage you want. An estimate for my Mom was $200 for a 60-day supply (137 lbs and 10 mgs) + shipping, of course. Additional, would be the Vitamin B1 supplements.

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Thanks for sharing this info queenzerka.  Would you mind sharing where you purchased DCA for your father?  I'm seriously considering this for my Mom who's been diagnosed with a tumor the size of a baseball...I'm open to anything that will help shrink my Mom's tumor. She's currently on her 2nd round of cisplatin/gemcitabine chemo regimen.

Thank you in advance.

Hi all. My Mom just finished her chemo #2 today. So far, so good! Anyway, as expected Cisplatin went up first followed by Gemcitabine (I believe there's hydration pre-, in between and post).

@PCL - here's the link provided by my Mom's oncologist.http://www.nejm.org/doi/full/10.1056/NEJMoa0908721
It's a clinical study published in the New England Journal of Medicine.

@Pamela - I appreciate all the information you provided. I wish you and Lauren all the best as well.  Lauren is very blessed to have you fighting this battle with her.

God bless!

Hi! So far, so good with my Mom post-first chemo round. She has been feeling the need to sleep more. I guess this is better as opposed to being sick in the stomach or something.

@PCL -  Sorry for the late response. I understand what you mean about shorter infusion time. It was an hour shorter because the RN administered both the IV hydration and Gemcitabine at the same time. Anyway, we'll be seeing her Oncologist on Monday and I'll make sure to ask him about the rationale behind the Cisplatin first then Gemcitabine next.

@Eli - Thanks again. I'll offer my Mom Tylenol (or Excedrin, as PCL recommended in one of the forums).

@PCL - Thanks for all the info. My Mom's next round of chemo will be on Monday. I believe we'll be seeing her Oncologist before administration. I'll ask him about the study.

Thanks for replying Eli. My Mom's nurse instructed us to take Zofran 3 days after chemo. I guess the combination of the IV anti-emetics (same family as of Zofran?)  given to her pre-chemo should cover the 1st 3 days. However, the rest (Compazine, Reglan and Lorazepam) she can take.
Just this morning, she woke up fine and then headache started to creep in. Is this an "aura" to nausea. Will Compazine help?

Thanks again.

Hi all...My Mom received her 1st chemo today (Cycle 1, Day 1). Her temperature is normal but WBC increased to 15+. She was given 3 different anti-nausea medicines (IV Emend, Dexamethasone and Aloxi). She 1st received Cisplatin and then Gemzar. Her Oncologist ordered specifically for her to receive Cisplatin 1st as opposed to their usual routine of Gemzar then Cisplatin. This was also clarified by the nurse. Apparently, there has been a study/clinical trial done sometime in 2011 regarding this matter. I guess, it is  significant as to which chemo drug goes in first.

My Mom was prescribed a bunch of anti-nausea meds to take as needed (Zofran, Compazine, Reglan and Lorazepam). Any thoughts as to which medicine to take first, with least side effects?

Thanks in advance.

Thank you PCL and Marion for taking the time to reply.  The port placement was postponed today. My Mom's oncologist decided that temp of 38C and elevated WBC is a little concerning....they ordered blood culture and urinalysis. Based on yesterday's CT scan, there is nothing concerning in the lungs. My Mom's temperature has been normal today/tonight. Accdg to her onco, should everything be OK over the weekend, chemo will still push through on Monday via peripheral IV.

God bless.

My Mom has been having low grade temperature (37.6 - 38C) for almost a week now. To make her feel better, she takes Ibuprofen 200 mgs  as needed (is this the correct drug of choice if someone has a fever? Or maybe, Tylenol?). I was able to take a peek on her lab results last week and today, it was 12. + and now 13.+. It is elevated, right?  She is scheduled to have a port placed tomorrow and very first dose of chemotherapy (Cisplatin and Gemcitabine) on Monday.  With the elevated WBC and low grade fever, is it safe for her to proceed with the port placement and chemotherapy?  I'm thinking anti-biotics as soon as possible. Will chemo be delayed because of these factors?

@PCL - Thanks for your advise. It seems like Y-90 has  a higher success rate in shrinking tumor/s, I wonder why my Mom's oncologist opted for systemic chemotherapy first. I wonder if he's aware that there's a 2-4 week "rest period" needed in between...

Thanks in advance.

Dear All,

Thank you very much for the warm welcome. I feel blessed to be part of this  truly amazing family.   

@PCL - My Mom's medical (and surgical) oncologist did mention Yttrium-90. It's just that he wanted no more delays, thus, systemic chemotherapy first while waiting for the "result" of the R submandibular lump. He says it's ok to have the Y-90 in between if the result is favorable. I am hoping that she'll be able to receive this treatment.

God Bless!

Hi all. I have been quietly reading on this Discussion Board/forum for about a month now and I've found it to be very insightful. My name is Lorraine and my dear Mom, Linda (67 y/o) was diagnosed, in January, with intra-hepatic cholangiocarcinoma. Her oncologist said that it is the size of a "baseball" and unfortunately, inoperable, because of portal vein involvement. On top of this, she has a big lump at the right side of her submandibular. PET scan revealed an SUV = 4.4 (maybe, cancer? accdg. to the doctors. If it is, it is highly unlikely to be metastasis from CC).  Thank goodness,  biopsy revealed non-cancer but don't know what it is. We are now referred to a Head and Neck doctor, who we're hoping to see next week. She will be starting her chemotherapy with Cisplatin and Gemcitabine on March 12 (Day 1, 7 and 21 protocol) at Seattle Care Cancer Alliance.  My Mom feels fine with occasional shortness of breath with some exertion. I have also noticed that her abdomen has gotten a little rounder. I am hoping that with her pre-chemo CT scan, it will show no growth and it is just my imagination. I have been very anxious about her upcoming chemo. I have heard and read horror stories about this and I continue to pray that my Mom will not experience any side effects.
I try to be strong for my Mom and my family. The truth of the matter is, I have been crying every night because I am very scared and it is only in prayers that I can find comfort for now.
Thank you for listening.