helpformom2016
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Hi! I am sorry about your friend.
You’ve had great responses thus far.
My mother is also inoperable with mets to spine and skull and a suspicious spot on lung.
Her main tumor is 4.5-3.5cm at the top of her right posterior lobe. No duct interference so the detection was stumbled upon vs symptoms presented.She has been doing GemOx. Her CA19 was never high- it was never a factor. Her liver panel was high during the LONG process of diagnosis due to HepC. It became all normal during treatment and then remission for the HepC.
Now doing chemo her LFT numbers are high and rising- which Ive read is common. CA19 is no longer a factor since her diagnosis.We went for a radiation consult but we decided not to bother with the treatments as she is not having pain from the small tumors on the spine and skull. Radiation can always be done in conjunction with or between chemo should they grow in size or number and cause pain. Otherwise systemic chemo is the only defense.
Mom is not a candidate for any surgery or transplant due to 1. cirrhosis 2. mets to other areas.
Chemo is her only option. We have a scan on Monday to check her progress.The long reads meant a lot to me and I learned so much.
There is no black and white/ cut and dry so the stories are the way.
I also use Google to do some of the legwork.Lainy wrote:Hi Brigitte. There are so many questions that go unanswered because of the rarity of this cancer but strides are being made. You may try our research engine at the top and type in a word or 2 that pertain to your situation and scan over the posts that appear. By reading the posts, questions could pop up in your mind about subjects you have not thought about. Have you also tried another ONC for a 2nd opinion?I agree with the search feature. Some things take a long time to read through especially if there are a lot of results, but in this case its a lot of learning on the way.
My mother coughs and produces so much mucus since starting chemo.
But she is not ill.
Why all the phlegm I wonder?Im on the FB group too. Just joined recently.
I recommend this site when I can and have spent HOURS here- and what amounts to days scouring the internet reading studies and personal accounts of patients and caregivers.
List your questions in one place.
List your questions here and we can help. Make sure to ask your onc at the next appt.
My moms onc said “are you medical?” at our consult I knew so much… not sure he liked it but I dont care. I knew what was what and it was helpful for mom to have me there to know what to ask and remember the answers.
Who are you seeing in Houston/where are you being cared for?-Meg
Wow Michelle! I feel like I could have written that as well, about mom. Minus the vision impairment (that sounds awful) – but the dizziness is there.
This last infusion- her 3rd – was unlike any other. Yes, the cumulative part is apparent now.
She was in poor condition as we left the hospital freezing then burning up. Sweating. Shaking.
She feels flu-like as well. Thankfully, even with recovering this time at my house- with my 3 kids she has remained well. -no fever, etc. She is coughing quite a bit with so much mucus it chokes her.
Her LFTs are elevated – triple what they were pre-chemo so I wonder if that is contributing to how bad she feels.Mom had Mets to bones show up in just 6 weeks between scans before we were cleared for chemo. I am anxious to see the scan he is ordering next week- to see where we stand and what the plan will be moving forward.
I think a break for a few weeks will be a good idea regardless of the scan results.Im actually trying to plan a weekend to take her some where in between chemo – or after we stop – or…whatever the plan is, when she is having a few good days. Having a hard time determining what would be a good fit for us given that she cant do too much physically for any length of time. She suffers from fibromyalgia and has neck pain from surgeries past. So my thinking cap is on….well, does it ever come off? No.
I appreciate the time you took to write all of that to me. To us.
Hi Lisa.
Welcome to the forum.
I am so sorry about your diagnosis and the progression of this nasty illness.
I hope the Xeloda gives you positive responses.This is a great place for information and connecting with others.
xoxox
MegShe went with Gem/Oxaliplatin instead of Cisplatin
She has done 3 rounds now. Her panel is elevated so we will be doing a CT scan before her next treatment to see if we will continue with Gem/Ox or switch.Her side effects are extreme fatigue- some nausea and no interest in eating for the first 3-8 days.
She is getting some neuropathy in her hands and feet and her cold tolerance is pretty bad.She drinks Ensure shakes, whey protein blended with milk blueberries and metamucil. Room temp for the first week or so. For her dense is preferred. She nibbles here and there.
I will say after her 2nd round there has not been as much “bounce back” afterwards. And this 3rd round is pretty bad. For as little as she is capable of doing I hope this damn chemo has made a difference. I selfishly want her to stop so she can enjoy being here but we will have to see.
I added our family photo with mom. I tried uploading yesterday but not sure if it took.
There may be two. How can we edit? – Sorry…I love this. It also breaks my heart. I love the tributes.
Hi LW
I am so sorry to hear about your mom. I am here for my mom as well.
Mom’s was inoperable due to cirrhosis.
She is stage IV also.- Mets to the spine and skull base and a suspicious nodule in her lung base.She is due for her 2nd round of Gemza/Oxaliplatin on Wednesday.
Her first round went pretty well. The hopes in doing chemo once it has spread is simply more time with us and to hopefully slow the spread. If we are lucky, maybe shrink some tumors.
We just dont know how it will respond.This is a great place for information and community. I hope you find some of the answers you are looking for. This is a painful journey but you arent alone.
Meg
We dont have an issue with fat intake since hers is ICC at the top posterior right lobe. Thankfully we have no interference with her major duct at this time. She has no jaundice or symptoms other than some abdominal pain and of course the mets to her bones. I will definitely keep this in mind though as we trot along. She is able to eat all macros equally- when she is hungry. She likes Ensure so thats good. Flavorless whey may be a good idea to add to foods.
Im so sorry for the struggles you and your family are facing. When I see the whey on top of my fridge Ill think of you guys. And also wish I was in my garage doing Stronglifts and not nursing my busted knee!– thank you so much for your insight.
Thank you Deadlift. She feels better when things coat her stomach but maybe not while on chemo.
By dense I mean with calories, not necessarily the consistency. But very good point. Protein is the macro she needs the most. Her meals will remain few but they need to count. She doesnt drink tea, hates drinking water. It will be interesting to see how this goes.Cold sensitivity due to Oxaliplatin will actually nix the smoothies idea I had….. hot soups I guess. Not sure how long that lasts. Going in blind it feels like- hope I do well.
Yes Marions. I have a bag packed. We will have our private room with TV, fridge, microwave.
We will be there all day so I brought dominos, cards, our adult coloring books, snacks, warm socks for her. She may sleep if shes not too anxious so Ill bring her best pillow.Thank you so much for sharing your story. I am so sorry for your loss.
Even though it is sometimes heartbreaking,reading the stories and experiences of others it does help those who are on this painful journey.
Please know your story, your mother’s story, will reach others to educate and believe it or not, offer some comfort.Take care.
Meg
