September 26, 2017 at 9:09 pm #95474
What chemo regimen is your mom starting? I am sending lots of good thoughts and prayers her way! I am with Gavin, a minimum of 4 years!!
MelindaSeptember 25, 2017 at 5:36 pm #95475
Thanks for the update and sorry to hear your news about your mum and the PET results, GRR to that. Lots of GRRR’s today it seems.Sounds like you have the plan in place for the chemo and you know that I will be keeping my fingers crossed for a successful outcome to it. And yes for sure, no way will she want to miss seeing your daughter get her PHD, a great day all round that will be for you all!
So the goal is another 4 years according to the surgeon, I would add a minimum of another 4 years!! Time for your mum to go kick some CC butt, again!!
GavinSeptember 24, 2017 at 12:42 am #95476sfbaybreezeParticipant
Catherine- Thank you for the update. I hope everything goes well with the treatment plan, it was good to hear that the oncologist wanted to know what you thought your mom could handle. I’ll certainly keep your family in my thoughts, TillySeptember 23, 2017 at 2:25 am #95477bglassModerator
Thank you for the update. It must be a relief for you and your mom that there is finally a treatment plan in place, and that it will not disrupt family plans to see your daughter receive her PhD (and congratulations on that achievement!)
Fingers crossed that the chemo does its job, along with the subsequent treatments the doctors are looking at.
Regards, MarySeptember 23, 2017 at 2:05 am #95478
Thank you Carla ( and all others for well wishes).
Molly- I totally agree with you on the PET- I should have pushed for this 6 months ago. Dr M said that in defense of the ONC, there are guidelines that say each patient should be limited to 3 PETS in a lifetime for a disease unless the doctor resets the clock. The ONC made me feel better by saying that if it recurred, we would see it near the bile duct and then could check the rest of body with PET. However, we found this logic did not work. Also, helpful info here reported ( I think from Mary) that after 2 years, recurrence is more likely to manifest itself not in the original location.
Guess I forgot to update that when we finally got the PET, it showed the cancer was also back close to original location too- not just the abdominal nodule It didn’t give us a warm fuzzy that CT did not show recurrence near liver. So, consult with surgeon was a waste of day- he would give no treatment plan until her case was presented to tumor board since he saw the liver/bile duct issue. We waited 2 weeks for tumor board, and then they said they wanted an MRI of the liver . I am not sure why when the surgeon pulled up the PET with us in the office with him, why did he not then say he needed to MRI to show more detail in the liver area. After the tumor board, we said if all agree chemo first, let’s start it. We know that at least the abdominal met was there since Jan, and we want to move forward. We did not want to wait for MRI and another board meeting.
Mom had first chemo on Monday and I think we are looking at 3 cycles ( 9 weeks total) and then scan before abdominal surgery ( and then local treatment on the liver). Our new ONC closer to home ( just for chemo administration) was “warned” about me, but was very supportive. At first she said 4 cycles, but finally she asked what treatment plan I wanted to see- I think 4 cycles would be very hard on Mom so I said 2-3 , And, we are planning her treatments so that she will be going to IN to see my daughter get her PhD on Dec 16. After surviving 4 years to be there, she does not plan on missing it.
Unfortunately, all agree that there is no easy by the book treatment plan. I worry that I should have pushed for biopsy before chemo (needle one was unsuccessful) so we could get Foundation One typing sooner. However, we had a few docs say they thought chemo first would be beneficial, so we are going with it.
So… after 2 or 3 cycles we will have a scan. However, since CT didn’t show the recurrence, guess we will have to ask what type of scan.
However, the good news is that 4 years ago when Mom’s cancer was limited to the bile duct, they told us 12 months. Now, even with the recurrence there and the abdominal met, they are willing to treat and surgeon said his goal is for another 4 years. Treatment options have gotten better and I hope they continue to do so. ( i think I did write these thoughts in another thread- but willing to say multiple times)
Best wishes to all – and thank you,
love and hugs,
CatherineSeptember 21, 2017 at 4:42 pm #95479carla4jeff49Participant
Sorry to hear the news about your mom having a recurrence. I am thinking about your family, and hope all goes well, and that she has many years good left ahead of her.
Carla HuffAugust 23, 2017 at 5:33 pm #95492
That is great to hear that progress is being made with your mum and the surgeon and the upcoming PET next week also. Fingers, toes and everything else will be crossed for the best possible news here and remember to let us know how it all goes.
And I agree with Melinda, rant was well warranted and welcomed!
GavinAugust 23, 2017 at 12:47 am #95491
Your rant was well warranted, and always welcomed! I am so happy to hear of the surgeon consult and PET scan….steps in the right direction.
Sending you and your mom big hugs and many prayers. xoxo
MelindaAugust 21, 2017 at 11:57 pm #95490
Gavin- Hugs right back at you!!!
I spent day on train back and forth to DC for a 2-hour meeting. However, we are finally moving forward for Mom. Meeting with surgeon on Friday to see about taking it out and then a PET scheduled for next Tuesday.
Again, Dr Moeslein came through for us and read her scans. Although his impression is that it is a recurrence ( I was hoping he’d say scar tissue) , his read and recommendations give us a path to move forward. He mentioned that he gave a consult from a board member from Gaithersburg too.
He really is amazing- he mentioned the wish that patient would get to him for treatment sooner. We were very fortunate that although Mom was still having positive response to chemo, that we moved forward with the Y-90. He said that often patients are worn out by the time they get to him . I said it would be great if he could go to SLC next Feb to present.
hugs to all,
catherineAugust 21, 2017 at 5:15 pm #95489
Just seen this post by you, my apologies for missing it! Real sorry to hear that your mum is having to deal with all of this again and also, no apologies are ever needed for rambling, even on a Monday morning so you go ahead and ramble as much as you want to!! I know that rambling and letting off steam always helps so go ahead as much as you want to!
Today is a great day for blaming everything on this totality stuff from the eclipse! At least that is my excuse and I am sticking to it! Watching it on tv here so hope you all enjoy it if you are in it’s path!
Hugs to you Catherine,
GavinAugust 21, 2017 at 12:51 pm #95488molly_mayParticipant
Two thoughts, and please keep in mind that I know “nothing”.
Why 2 weeks to get the PET? The only good thing that crazy surgeon I saw did, was to order a PET, so at least we would have an idea of whether or not my ovarian cyst was cancerous. It would have taken a week to schedule at my local hospital (who relies on a mobile unit), so instead I went to another place where I could get in the next day, with results the following day. I just had to drive further.
Secondly, if this is “floating”, maybe it could be removed the same way they removed my cyst. They made a small laparoscopic incision, used a camera to look around, and then “bagged” the cyst and pulled it out whole. No need to contaminate or potentially “seed” the area with biopsies, and net-net, no matter what, don’t you think it needs to come out?
At any rate, it would seem the PET is the place to start rather than more needle biopsies.
If I’m out in left field (as usual), PLEASE disregard this as you (and others) know so much more about all of this stuff than I do.
Wishing you the best,
MollyAugust 21, 2017 at 10:25 am #95487
That you for the support. Mom waited all weekend, ( we were told ONC would be on this weekend and return call), but no call and no response to my two emails. I’m debating if we should go through moving Mom’s treatment down the street to JHU. The assistant did return the Thurs morning call late Friday afternoon and said her chart included an order to retry the needle biopsy- not the way we want to go. We have an appointment scheduled tomorrow which was to go over biopsy so I guess I will still take the day off work just so we can get the ONC to speak with us. Ideally, the time off would be to take her for a surgical consult or a PET scan ( sorry I am fed up). If the biopsy has a great chance of failure again, why are we waiting and wasting more time? Because of their error (ONC explained the radiologists are only human- they also commented her appendix was unremarkable ( she doesn’t have one)) the mass has doubled in size since Jan. And, I wonder if they do attempt to get the biopsy, would multiple “pokes” be something that causes seeding?
Monday morning and I’m ranting- sorry. Do I have unrealistic expectations that when they couldn’t do the biopsy that the ONC would return our calls the next day rather than make us wait till following week? She already warned us that a PET takes a few weeks to get an appointment for- I think last Thursday we should have been able to call and make that appointment.
Happy Eclipse Day!
CatherineAugust 21, 2017 at 3:49 am #95486
I am so sorry to hear of the recurrence for your mother. My recurrence was in my lungs, not my liver, three months after my resection. I would definitely push for the completer removal of the floating tumor, especially since it is the only one. Please keep us posted. You both will be in my thoughts and prayers.
All my best,
MelindaAugust 19, 2017 at 12:37 am #95485
It’s just one mass- they missed seeing it in Jan, and now it is 2.5 x 1.5 cm. I’d be interested if the PET should/ or would not pick up something this large. If the ONC returns call/email, it’s something we would like to schedule.
Thank you for the info on the HIPEC- I don’t think we’re looking at additional mets, but it’s always helpful to know as much as we can going in.
CatherineAugust 18, 2017 at 8:39 pm #95484vtkbParticipant
Is it just one mass/nodule in the abdominal cavity or are they thinking its mets to the omentum? While not a cure, mets to the omentum for other diseases have been dealt with HIPEC (the option presented to us at Mt Sinai had they been present during the surgery) to prolong survival. Its still experimental for cholangio though, but has been done with appendiceal and colon cancer with mets to omentum… Just a thought for another option if that is what your mom is dealing with. Also Ive heard PET scans arent the greatest for cholangio so maybe thats why they didnt get one. Hope you get good news,
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