Daughter of Newly Diagnosed 58yo Mom
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Percy, I am so happy you are feeling a little better. Don’t rush anything. I LOVE Chinese Food and like I said NO COMPITITION between you and Teddy. You will do very well because there is no where else to eat on Christmas Eve!!!! Teddy just told me he added his famous Calamari Marinara and Octopus Salad to his menu. UGH to me but his Grandkids LOVE it! They all have his recipes. Take it slow and easy and feel better.
Hi, ladies,
Since I feel a bit stronger today( energy wise). And I love hot Mexican food.
Ted’s Italy restaurant is of course 4 stars, but Chinese restaurants are famous in cutting price and give out free egg rolls which just cause a dime to make.
If not enough, I will add a couple fortune cookies , how’ s that.
Thanks for praying for me. And give me big hugs.
It was tough the last few days, lack of energy ,a bit shortness of breath,but no pain and no N/V.God bless.
Funny, Percy! I love Chinese food! But you’ll have to compete with the Mexican restaurant my Dad just opened..he makes a mean chile verde!
Percy, Competition??? NEVER, not with you! And anyway if the Chinese restaurants were not open Christmas Eve where would all the Jewish people go to eat???? You really cracked me up on this one!
Hi, Lainy,
I can tell my body is not as strong and cannot tolerate the medicine as when I was young.
I just hope that during my life time ,things can improve such that at least we ,as chemotherapy patient can suffer less. Thru better treatment.
I will honestly say, if coming down to the last choice, I will sure I will open a Chinese restaurant to compete with you Ted’s Italy ones.
God blessPercy, I so agree with you. When we were given the ‘final’ prognosis for Teddy he was almost 78 and had CC for 5 years. He chose quality over quantity and we never regretted it. He had an aborted Whipple after 4 hours of surgery, then a double e coli infection while healing and 3 weeks later the real deal. He had complications while healing and after flying back to Phoenix from Milwaukee where everything occurred, he went in to rehab for a month because of a leak from the surgery. Then it was a constant change of bile tubes for 2 years, then the CC recurred and bent his right ureter and he had a stent for that and he had radiation and Cyber Knife and on and on. He made his own choices and I felt he could not have done more. He had a ton of faith and a gazillion tons of attitude and zero complaints the whole 5 years. I agree that it is very important to know when one has done the best they can it is up to the individual to decide and conquer. You know I always send my love to you, you are some kind of special man!
Hi,
Base on your lasts report, the best treatment is you can joint is the ” TIL trial at NIH in WashingtonDC area. And it is free.http://www.cholangiocarcinoma.org/clinicaltrials.htm
I think your mother had go thru a lot of the chemotherapy, her body might take a bog toll already,unless she still want to fight to the last battle without realizing their are always limits in everything including medical treatinment. Quality iof life is some sometimes Better than quantity.
God bless.Hi Aticon,
Thanks for giving us an update on how things have been going for your mum. She sure has been through so much and what a fighter she is! I too wish that you had better news to share with us I so hope that your mums new regimen will work well and hopefully it will be a bit easier on her as well, and I will certainly be keeping everything crossed for the best possible results too. Please let us know how everything goes and you know that we are here for you.
My best wishes to you and your mum,
Gavin
Dear Aticon, I am so sorry that your Mom is having to go through all this and truly hope this new chemo and the radiation will help. She is a real warrior! Thank you for the update although I wish it had been better news. You mentioned she is losing weight, are you using any nutritional drinks like Carnation Instant Breakfast. Vanilla was my Teddy’s favorite and I would blend in fruit, usually a banana. One drink can take the place of any meal. Also instead of full meals have her ‘graze’ on food all day…a bite or 2 here or there. Comfort foods work well. You are an amazing daughter on a journey no one wanted. Please keep us informed and Be Strong!
Hi all ~ haven’t posted since my original, and there are some updates to share about my Mom.
After recovery from neurosurgery to remove the diseased C4 vertebrae (bone/spine has been her primary metastasis from CC), 10 rounds of daily radiation targeted on the C4 region was completed. Side effects were minimal, just some moderate nausea that was easily controlled with Zofran, and a mild sore throat (frontal region of the C4 treatment site).
Then chemo began (Gem/Cis) – suggested regimen was 6 cycles initially, and Mom made it through 5 before electing not to complete the 6th. Side effects included daily, constant nausea which Zofran didn’t help with a bit; inability to keep food down resulting in weight loss; no appetite; GI distress; abdominal tenderness; body aches and flu-like symptoms; sleeping difficulties; vein pain which prompted the installation of a collarbone port; numbness in left toes/ball of foot and calf; etc. Nonetheless, her attitude has been steadfastly positive and upbeat — and remains so.
On Monday, 7/8 she had the first round of follow-up tests (xrays, PET scan, etc. etc.) since diagnosis 3/21, spinal surgery 4/5, radiation 4/25-5/7, and first cycle of Gem/Cis chemo (5/13-6/28). We all had high hopes for improvement, but results conveyed in appointment 7/9 with primary biliary oncologist showed a “mixed bag”. Generally, new lesions or an increase in size. Several have decreased in size or stayed the same. Continued mets to spine showed several that need immediate attention (L7, L10, L11, Sacrum, Sternum, Thoracic areas, etc.). One is pressing on the spinal chord. New symptoms include upper back skeletal pain, difficulty rising/getting out of bed, pain when turning/twisting from the waist. Gem/Cis was doing something, but barely. Suggested switch to either [1] palliative care, or [2] different chemo regimen (FOLFOX). She’s a fighter and is not in the mindset of palliative care at this time, so we’re switching to FOLFOX and setting up a new chemo regimen. Appointment with radiation oncologist 7/10 included new tattoos/setup to begin new (second) round of radiation today (7/11). Will include 15 cycles, with simultaneous chemo.
Radiation oncologist is at St. John’s (Santa Monica). Primary oncologist is at UCLA, who referred her to the Norris Cancer Center at USC since he’s limited only to UCLA programs. Met with a doctor there this morning to look at her case and see what he thinks. Will report back.
Thanks for ongoing interest and concern.
Hi Aticon,
You and your Mom have had a lot thrown at you in three weeks. My oncologist, at The Cleveland Clinic, also consulted with Dr. Javle at MD Anderson. Tiffany from this group sees Dr. Javle and she said he is wonderful.
Sending prayers
LisaHi,
“We’ve recently learned that she was accepted into an anti-PD1 trial, which is not chemo but leads the immune system to fight the cancer. Tissue samples from 2 separate liver biopsies and the C4 vertebral tumor are also being sent to GenenTech and the Caris Foundation for evaluation..
And since your mother has been gone thru a lot of surgical treatment,and the successful outcome of chemotherapy for CCAis around 20% with side effects that can diminish the quality of life substantially for your mom a lot.
My suggestion base on your statement above will be immunotherapy since your mother qualified for. The only worry I will have is the pneumonitis side effect caused by this treatment and the grade 3 diarrhea is of my concern too. But ,overall, it seems the benefit will outweigh the risk.
The anti-PD1 trial looks promising (please read the link below.)http://www.nejm.org/doi/full/10.1056/NEJMoa1200690#t=articleMethods
The message I got yesterday from the hepatobiliary symposium about using immunotherapy is encouraging for CCA patients like your mom and me .Of course I am not a doctor but a patient of this disease too.
God bless..
Hi Aticon,
The medical paper linked below describes the link between Lynch syndrome and CC.
Hereditary Pancreatic and Hepatobiliary Cancers
http://www.hindawi.com/journals/ijso/2011/154673/Here’s the relevant paragraph from the paper:
Quote:3.2.1. Specific Diseases with Inherited Predisposition for Bile-Duct CancerIn a cohort of 472 patients from 15 different families with HNPCC, cancer of the biliopancreatic tract was seen in 18 patients, 11 (79%) of which were confirmed as arising in the biliary tree or ampulla of Vater [87]. Despite a >9-fold increased risk of bile-duct cancer in patients with HNPCC [88], routine screening for bile-duct cancer has not been recommended [89], owing in large part to the difficulty in detecting these cancers and their rarity.
HNPCC refers to Lynch syndrome. This paragraph answers two of your questions:
1. Lynch syndrome dose raise the risk of bile duct cancer.
2. Routine screening is not recommended.My wife’s tumor got tested for Lynch syndrome after her surgery. The result was negative.
Sear Aticon, I must say I will think about eating a bagel now that it has a new meaning! I am glad the pain is coming down. I know when my Husband had his Whipple, Morphine worked best for him. Dilaudid and Fentanyl did nothing but everyone is different. My husband was Sicilian, therefore a staunch Catholic, besides a staunch Sicilian, lol. (I am Jewish) and his faith did wonders for his attitude which taught me a valuable life lesson. I have to give you my ‘ol Teddy bracelet story: We also had given out bracelets to friends and family, One night a couple was visiting and we took them to our favorite Italian Restaurant and as usual T and I were wearing our bracelets. His friend asked him what the bracelet said, (and as we all know it is very hard to pronounce let alone spell)and T said oh, that’s my Cancer…..Angelo Carcinoma! I had to hold my mouth not to laugh, but leave it to Teddy to make his Cancer a Sicilian! I guess we got through everything with some humor thrown in. BTW, of course you have not landed yet from this roller coaster as you have only known for 2 weeks. I promise you that once a game plan is in place the fright will turn even more to fight.
Dear Aticon,
Hello and welcome the site that you really never wanted to join, but is full of wonderful people and great information.
Wow, you and your Mom have been through a lot in 3 weeks time. Your note indicates that you are the type that likes to get all of the information you can and make good informed decisions. That is the best defense against this disease, so you are already armed and ready for the fight!
Dr. Javle is a name I see on this site often and with very positive comments. Sounds like you are doing the right things to take control of the situation and I hope that is giving you a sense of comfort.
I’ve never heard of Lynch Syndrome but I was tested for all of the BRCAs, Cowden Syndrome and Li-Fraumeni (all were negative). I have never heard of people getting regular PET scans to detect cancer that they don’t already have. I’ll bet there are many pros and cons to this approach, since there are a many false positives for PET scans and it may cause undue stress and further treatment where none is needed. To be honest, I have had cancer 3 times and have never had a PET scan in my life. I’ll be curious to see what the docs say about that to you.
I hope things start falling into place for your dear Mom and she gets started on a treatment that helps soon.
Please keep us posted on her progress and my thoughts are with you, your Mom and your family.
-Randi-
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