helpformom2016
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Mom passed away on April 28, 2017…….. 5-6 Months after stopping chemo.
Only the first 2 of those months were pleasant.
Mom passed away on April 28, 2017.
10 Months after finding the mass.
8 months after biopsy confirmed ICC
6 Months after stopping chemo.Ill post in the remembrance area and share the tribute of her beautiful life.
For future readers I will come back and fill in the last medical/progression details from Jan – April when I can.
Im having too hard of a time.For any readers-
Moms CT 3 weeks ago after a trip to the ER for 10 days of headaches, showed lytic changes in the foramen magnum (where her mets is) and sinusitis.
MRI last week.
We see ONC for review of the MRI today.She has been practically bedridden for 3 weeks due to head and neck pain.
I will come back and update later…..Mom was having mild right side abdominal pain so Dr. looked for signs of appendicitis and the mass was seen on her liver. Took nearly 2 months for a biopsy to confirm ICC.
PET showed mets to spine and skull.My mother did 4 rounds of gem/ox- liver mass showed stable.
It had already spread to spine and skull.She opted for no more chemo as it completely debilitated her. It was palliatative- not curable.
She is 65yo
This was Oct 21- her last treatment. She had a great Nov and Dec.Today we see her onc. Her skull mets has officially ruined her January and shes been practically bedridden with head and neck pain all month. Also suffering terrible sinusitus shown on CT scan earlier this month.
Her bloodwork over the last few checkups has been great.
Radiation for her bone mets is in our future. The skull base tumor is presenting lytic changes of her foramen magnum. Today we will review her MRI from last week to get all the details.
Stopping or refusing treatment is very personal- there is no right or wrong. If there is a chance for success- explore the options so you can say you tried- is my offering. But in the end, for many quality over rules quantity.
xoxox
MegI just wanted to update that we are 6 weeks from last treatment.
Mom is doing better each day.Her LFTs and CA-19 are all within normal range.
Her HEP C is still undetectable!! (she took Harvoni for 3 weeks prior to chemo)
She has been spending time with my kids, visiting friends, picking up and holding my 17mo old, enjoying food and was even able to take care of me when I became ill over the weekend.I have her back!
Its been wonderful to see her smile and enjoy her days.
its still a question as to what will happen down the road but what she doesnt question is that she made the right choice to stop chemo.Hi Shellie.
I understand your feelings. Mom’s chemo depleted her of everything that made her, HER.
She has decided no more. Her last treatment was 10/12/16. We go next Friday to meet with her Onc about how her care will change/monitor her disease now that she isnt doing chemo.Yesterday -finally- my mother was herself. Everything from her voice, her pace around the house, her face and spirit. I can only pray for more days like that.
It was something I havent seen for months. Even before our chemo she was on Harvoni to treat her HepC – YUCK!
Im glad you are going where you will feel more attended to. I dont know about FOLFOX other than the Oxaliplatin part of it. Chemo is a real bitch- there is no nice way to put it so I wont bother.
Some people can handle it better than others.Guidance and “what should we do?” about it all is like sailing a ship at night with no moon or stars.
I hope the new doctor can be a light for you and Dale.
xoxoxHi Ladonner.
I am sorry about your recent progression.
I dont have personal experience with FolFox… only the Oxaliplatin part of it.It seems you already have Gem/Cis experience. How well did you tolerate that?
What are your concerns about the FolFox?
Oxaliplatin is a very strong medicine. (but arent they all?)
Tolerance is of course extremely variable and personal. I feel the younger and stronger a person – and their over all health – the better chances they are of recovering after the infusions. So that is something to keep in mind when reading the experiences of others.My mother is 65 and has done 4 rounds of Gem/Oxaliplatin. It has been 16 days since moms last treatment and she is still too tired to do much of anything. The neuropathy in her hands has prevented her from using her phone much and the cold sensitivity has lingered. Even walking on cold tile floors. She did mouth rinses periodically and ended up with 1 or 2 sores. She was very queezy (but is naturally with any meds) – Taking the nausea meds religiously helps tremendously. Her appetite was non existent. She drank warm Ensure, whey protein shakes, and hamburger patties.
To me though- the fact that your tumor responded so well to treatment sounds hopeful. And a surgical consult is a wonderful thing even to be considered. Its what we all hope for.
I hope you get some responses about 5FU in the coming days that will provide you the information you seek.
I wish you all the best.xoxox
MegI agree with Joe – time is important. Not to make you fearful which Im sure you already are but because there is just so much we dont know and so many variables that differ from person to person.
Mom found her mass early June- asymptomatic. It wasnt until August 1 as part of her liver transplant evaluation that a biopsy was approved. (Previously had 3 sets of images, confused whether it was ICC Or Hepatocellular carcinoma- and didnt want to biopsy a cirrhotic liver with HepC)
Liver Transplant team needed to be sure. Pathology came back ICC- 2 days later PET scan showed 3 spots on thoracic spine and base of skull. (6 weeks prior to PET her Bone MRI showed no lesions)
So some of these are fast acting others are slow. This cancer doesnt come with a bullet list of predictions like other common cancers. There are also various treatment options with surgery being the most successful and sought after. For many however it is non-resectable.
Hi Kay.
I am sorry to hear about your dad. I know the time prior to diagnosis and before any treatment plan is established is a bit like whiplash. Ive been there.How does his blood work look? What are some symptoms?
I dont know what facility you are going to but a multi-disciplinary team is definitely a must.
Usually made up of a surgeon, oncologist, radiologist and liver specialist. They review cases and decide the best course of action.An oncologist with experience with this cancer should be at the top of your check list.
Do you have an appointment scheduled yet?
I am so sorry to hear about your dad and that the cancer is in multiple places.
Blood clots are no joke and pose an immediate risk. very scary
I know this is very hard but I hope some others in Canada will respond. I havent seen many posts with blood clots added to the mix. Im so sorry.Its important to have a dr experienced with this cancer but I will say once it has spread our options so become quite limited. My mother is also stage 4 and unresectable.
xoxo
MeganHi Shell.
Remember that stable is good. Yes shrinkage is preferred but no growth or new tumors is really good news. I am in the same boat as you are.
My mother really cant stand the thought of another infusion as bad as she feels. Her treatments have kept her disease stable. So we are very thankful for no new spread. But she isnt herself or able to do much of anything but lay down.Our plan was chemo to keep the cancer from spreading and growing (its already in her bones). That was our only option. So she will have to be on chemo – which ever kind – until it doesnt work anymore – or she quits.
Its not a spot anyone wants to be in. Talk to your ONC about options. Ive not heard about IPT.If you’ve had an update since this post I hope you’ll share it.
xoxox
MegMy mother has been and still is asymptomatic with 1 liver mass and small mets to spine and skull base since diagnosed in June.
Her LFT is elevated due to the chemo but she is otherwise ok. (Completely not touching on the chemo symptoms when I say she is ok)
But symptoms from her cancer? Not there. Never really were.
When will they appear? What will this progress as? So many unknowns. It can feel like despair. I have found trying to look at the great unknown with as much positivism as I can.xoxoxo Rebecca
I dont have experience with Y90 personally- just systemic chemo for one mass and mets to bones.
– but I wanted to bump up your post.xoxox
