helpformom2016
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Thank you all for the replies.
We met with her ONC who discussed the side effects of the 2 chemo options.
Moms major fear/ anxiety with chemo is the nausea as she is already a weak stomach person, suffers gastritis and cant take many oral meds due to how sick they make her feel.GEM/CIS is her option. Her ONC cautioned her about kidney issues and nausea.
GEM/OX is her 2nd option. He cautioned her about extreme cold sensitivity for the first few days, greater rick of neuropathy but less nausea.Choosing the lesser of two evils here. She is going with GEMOX every other Wednesday for 4 treatments. Then we will reassess.
She has stopped the Harvoni due to how fatigued but insomniatic she is. the nausea, and confusion it causes her. She is so wiped out she cant even go to the grocery store.
Her HepC viral load was undetectable at 4 weeks. Shes done 8 weeks of treatment. She cant possibly tolerate anything on top of the Harvoni. Her ONC, when I mentioned her stopping said “thats like a lady asking me if she should have a mammogram when she has stage 4 pancreatic cancer” – a little gruff but he shared my sentiment.My main concern is her food intake.
She already eats like a bird, well, less than a bird, so that is my goal – feed her.
The thought of eating often makes her not want to eat.
Her body cant possibly have any energy or function properly without adequate nutrition or substantial calories. This is my stress and I fear it will only get worse.We go on Wednesday for her first treatment and as Im sure many of you remember the anxiety and gut turning anticipation that it brings.
12 weeks after mass detected and 4 weeks after mets detected we start treatment. I just hope its not too little too lateThank you for that link. That is along the lines of what I was wanting to see (but pained me to read it)
Its one thing to KNOW certain things, its another to physically see it as a reminder.She is so easily nauseated by medication I worry for her.
She’s already so tired most of the time, but we are going to try.We see her ONC on Friday for anything mom may want to talk about with him.
1st chemo treatment is next Wed. (12 weeks after 4cm mass showed on CT Scan)
It is scheduled for every other Wed. (2 week cycle it looks like)
I suppose its more often than other cycles due to the mets. (Question #1 for Friday)
…his nurse scheduled all the chemo appts prior to our “chemo consult” appt since we called and told her we wanted to get started ASAP after talking with the radiology onc.(mom if you end up reading my posts while searching for info on this site…… i love you)
Im so sorry you are having to go through this. This is not a place anyone wants to welcome another to, but this place is a Godsend. To me anyway. Ive learned so much here, which has helped calm my fears and give me answers between appointments.
My mother, just *confirmed* diagnosed earlier this month after having had multiple scans June-July (MRIs and CT) and they werent 100% sure if it was Intrahepatic Cholangio or Hepatocellular Carcinoma. The process for us has been very long unfortunately.
Initial discovery was a liver mass showing on CT checking for appendicitis after some prolonged mild abdominal pain at the beginning of June.She presented no real symptoms and all of her blood work, including tumor markers were within normal range. Ultrasound guided needle biopsy confirmed the diagnosis.
Im no expert and only have what I have read and experienced thus far but Im here, if I can be of any help.
Bless you both.
MegThank you Marions!
I appreciate the description of the tests. I thought the PET/CT would have been the end -all- be -all but I guess its good we are getting clearer pictures.Mom is very weak today and suffering lots of sinus trouble. So Ill be driving her to the MRI.
BUT- I wanted to say – She started on Harvoni at the end of June and as of mid-July her HEP C was in REMISSION!! Undetectable! How awesome is that?!
Thanks for the encouragement. I am feeling better today.
Lainy you hit the nail on the head. Fright turns to fight. I needed to hear that today. That helps me to identify some of what Im feeling.
The fight, thats what I’m waiting for.
Mom and I have been to every appointment together since the mass was found in early June. She gets confused lately it seems and she cant retain as much detail. We will have 4 ears and my pen and paper.
I will update Thurs/Friday.
Again, thank you.
Id love for her to go to MD Anderson and see Dr Javle. We have no insurance coverage there, unfortunately. We are across the street at Methodist.
I have my questions prepared for him once we see the MRI. And essentially, this MRI is a second opinion. — even though she has had 2 multi disciplinary committee reviews…I dont doubt that we are in good hands. Its just all so slow! The transplant evaluation, additional tests and scheduling lag all before a biopsy was approved really delayed some things.My biggest issue – and I feel its with myself more than anything else… is all the hurry up and wait. Im the kind of person that wants ALL the info…NOW. Not a “lets wait and see if we need to have that conversation” approach.
I can appreciate that he doest want to just start radiation if there is any chance it may be something else showing in her bones. He was very generous in helping manage her neck pain and I’m grateful for that.
Thanks Lainy for your reply. I hope I have a better attitude on my next update later this week. Today Im just angry and need to step away from my keyboard.
-Meg
Update for future readers:
I will continue to update this timeline of events in hopes that it helps at least 1 person or answers one question.In 2011 there were no masses detected on the liver via CT scan (monitoring HepC) .
In 2016 there was a 4.2cm mass. In regards to how fast or slow this thing grows- the 5 year span is our only point of reference. *MRIs 6 weeks apart showed new appearance of mets to bones and skull*June 3- Overall not feeling well- pain in abdomen. CT Scan to rule out appendicitis
**Mass on Liver Found – Suspected Hepatocellular Carcinoma – MRI To confirm
June 7 – MRI Confirmed Mass – results “atypical for HCC”- overall inconclusive
June 23- 2nd MRI of Abdomen, Bones and Chest CT
***MRI favors ICC ***MRI of Bones and CT scan – clear
July 18 Liver transplant evaluation- Interdisciplinary team says inoperable – biopsy needed
Aug 1- Biopsy (Confirmed Intrahepatic Cholangiocarcinoma)
Aug 3– PET Scan (Shows Mets to thoracic spine lesion (1.5×1.3cm) and skull base (1.5cmx1cm)
Aug 10– MRI of Skull, Spine and Brain
*MRI confirmed T9, (new) T6 and the space between T9/T10 and right side of skull base.
Brain and cervical spine no METS. Liver transplant evaluation – denied
Aug18– Radiation Consult – forgoing radiation on her spine and skull as they are not presenting pain or any issues /symptoms or effecting her spinal cord, etc.
Aug31-Chemo with GEMOX every other Wednesday for 4 treatments. Then we will reassess.
Oct 10th- CT Scan to check progress – LFTs are high.
Scan Results: Stable Disease. No change in initial measurements of mass. No new growths.!!
Oct 12- 4th treatment – Mom is really feeling the effects of the chemo and missing being able to do things…any thing.
Her liver mass and spots on bones dont really present any “symptoms” – she is suffering the chemo. She is doing soul searching on whether or not to continue with chemo or enjoy her days.Nov 23- Mom’s last treatment was 10.12.16. Since then she has steadily improved with overall energy and ability to enjoy life. She still gets tired but the farther away we get from her last treatment the better. Onc said up to 2 months post chemo to see a full rebound to be back where she was before chemo. We will see ONC every 4 weeks for a check in. Until her health deteriorates we will just be monitored. Her blood work looks GREAT! All within normal limits AND her HEP C is still undetectable.
Jan 30, 2017- Mom had a great December. However she has been practically bedridden since New Year with headache. CT on Jan 8th – ER Trip due to headache for 10 days, showed sinusitis and lytic changes to the foramen magnum where her bone mets is. Today we see ONC to go over the MRI from 1/26 to get a better idea what is going on. She is in bad shape. Will update after our appt.
Thank you. He has ordered an MRI on skull, brain and spine.
I am not sure why the PET isnt enough- this seems to be the way things have been going with us… Lets get another test to check this test. But he said he wants to make sure it is the spread and not something else. – like arthritis… in the skull base?? In her spine?? Im SO confused and irritated today.
This is from her PET: — and it seems pretty clear to me!
The liver mass seen on previous MRI demonstrates
abnormal uptake, with an SUV of 9.9.
The right hepatic mass seen on previous MRI demonstrates abnormal
uptake, compatible with primary liver malignancy.
Osseous metastasis is seen in the skull base and thoracic spine.
Abnormal uptake is present within a destructive lytic
lesion in the spinous process of T9, with an SUV of 4.9. The soft
tissue lesion measures 1.5 cm x 1.2 cm. Another lesion is present in
the skull base, with an SUV of 5.3. This lesion measures 1.4 cm x 1
cm.Why are we wasting time on MRI?
He didnt seem too optimistic about chemo and its effects vs help….. and he said if there was no spread they would treat the primary tumor– but if it has spread then there is no point in treating the primary tumor with the standard therapy. We would do radiation on her bones and then chemo.
Why wont he start us on chemo? Any one have any ideas? (other than him wanting to see the MRI I didnt get another answer- Is it because this spread offers such a poor prognosis chemo wouldnt be worth it?!I admit I havent researched much in the way of treatment as we were NOT expecting mets since her bone and abdominal MRI in june showed no additional tumors or abnormalities.
He said we will talk more after the MRI on Wed— but in the meantime I am confused and impatient!
Just a place to update our journey.
Her hepatologist confirmed the metastasis via PET1.5×1.3cm and 1.2×1.4 size lesions on her thoracic spine and skull base…..and 1cm lesion in left lung.
Got immediate appointment with oncologist so hopefully we can start chemo. Time to read the treatment section of the forum. Her hepatologist mentioned they may not treat her liver rather than try to control the spread.
Is this what we call stage 4?Seems it’s a fast spread as the MRI of bones and lung on June 23rd didn’t show and lesions.
You provided her amazing care and in that I’m sure she had peace.
I’m so sorry for your loss
For it all to happen so quickly is very sad and there isn’t much time to process it all.I will pray for you and your family.
Thank you for sharing your story.~Meg
First biopsy was successful. ICC
PET has mets to spine and skull.I appreciate these replies and Im thankful more biopsies werent needed.
Im so sorry Daisy….
I just re-read her Bone MRI report and Im just so confused!
In 6(ish) weeks no signs of metastatic disease in bones on MRI to the PET lighting up her spine and skull!?!! I tried searching this forum to get an idea on how fast this cancer has spread for others but I must not be using my brain correctly today.
Thank you both for replying.
As far as genetic alterations, I dont know.
The only person I spoke to was the Evaluation team nurse as to why she was rejected. I already knew cholangio would mean denial, and in my gut I knew it was ICC even before biopsy based off the imaging – I just wasnt prepared for the “why” – Metastatic Disease.Her body – as seen through the battery of transplant evaluation tests- is doing well : Liver Panel, Echo, Kidney, Pulmonary functions, etc. So at least she is not plagued with debilitating symptoms or ailing bodily functions.
Im just so, so curious as to why nothing showed on the Bone MRI in June but is present on the PET in Aug…. I am not too familiar with PET as I am with MRI. How does it present on the spine…tumor? Could it have spread in 6 weeks? So now, more waiting until Im in front of someone to get answers to these questions.
Treatment was always the plan- so now its just more areas to treat. Thats my positive thought for today.
I will check out the link and do a search- today may yield better results than yesterday during my time of woe.
Hi Beth,
Houston TX here too.
Im so sorry you are going through this. It is a lot to take in. Do you have someone who can be there for you?My mother is being treated at Methodist. She is on Medicare so no MD Anderson for us. But I have not once doubted that we arent in great care.
She has HepC, some cirrhosis and enlarged spleen. Her mass is 4.2cmx3.5cm as of June 26th- right posterior lobe, no other abnormalities seen in imaging. Her blood work all looks good- no crazy high levels, tumor markers and liver/kidney function so we are grateful for that.
She is not a candidate for resection, unfortunately. Due to the size, and location of the mass but predominately due to the fact that she has cirrhosis.
Shes had CT/MRI/Endoscopy and yesterday a biopsy- tomorrow a PET Scan.
We have completed the liver transplant evaluation. (pending biopsy and PET)
Hopefully by next week we can get started on treatment.
Sorry for rambling our story. It is very overwhelming and we’d be lost without each other.I hope your appointment today was successful and your Dr has set you on a path! The waiting is the hardest part. This site has been so helpful.
Im certainly no expert but logistically we are close and Id love to hear how you are doing.
~meg
I believe it has a lot to do with where the mass is and also how well your kidneys are functioning.
My mother has ICC (awaiting biopsy confirmation) and does not have jaundice or itching or other symptoms that come along with an abundance of bilirubin and blockage. Her mass is not blocking any major ducts.
