Are we out of options?
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- This topic has 12 replies, 6 voices, and was last updated 9 years, 6 months ago by dukenukem.
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June 23, 2015 at 12:52 am #87565dukenukemMember
Sandy –
Getting into the discussion about AG-120 a little. Irinotecan is not working so onc is looking into AG-120.I like the idea of pills instead of infusion, but 24 pills a day for 28 days is beyond belief.
Any insight you can give me will be gratefully accepted. Info from anyone on AG-120 will be welcome.
thanks
Duke
April 21, 2015 at 3:49 am #87564sandynycMemberThanks so much Marion!
You have no idea, you are such a source of comfort – it is so easy to second guess every little thing. All I want to do is make my hero comfortable and feeling better!April 20, 2015 at 7:47 pm #87563marionsModeratorsandy…..seems that you are doing everything right other than elevating is legs as often as possible. You might also want to speak with the physician re: your husband’s fluid intake and to what amount.
Hugs,
MarionApril 20, 2015 at 5:31 am #87562sandynycMemberThanks so much Marion!
Yes the Trial is in pill form – he takes 3 -200mg tablets twice a day
(a real pleasure compared to the AGiOS one where he had to take 24 pills each time because they were at an advanced dosing stage but the size of the pills hadn’t caught up yet with the larger doses).
So far no side effects other than being very very tired but they cautioned us to expect that on all the trials
No new side effects fortunately to speak of.
He takes Dilaudid when he has Tumor pain (with a Compazine chaser as the D brings on nausea) and that seems to do the trick.
The biggest discomfort the last month or so has been the Ascites – the belly seems to be filling up less after he was drained the second time. It is his feet, ankle and legs swelling the last few days that are giving him the greatest discomfort.
Anyone know what can help here? They have him on diuretics and of course we are cutting out all salt wherever we can.April 19, 2015 at 9:18 pm #87561marionsModeratorSandy…..Thought to pull up the link to the clinical trial:
https://clinicaltrials.gov/ct2/show/NCT02071862
and realized that the drug is in pill form. That’s great; it eliminates the lengthy infusion time. You mentioned 5 completed treatments, but nothing in regards to side effects. I assume that side effects (if any) are tolerable. Thinking of you and sending a tidal wave of good wishes your way.
Hugs,
MarionApril 19, 2015 at 6:10 pm #87560lainySpectatorYea! for Dave and I join you in crossing everything even my eyes! Sending more prayers, good vines and of course more good juju and all is coming Fed Ex!!!!
April 19, 2015 at 5:51 pm #87559sandynycMemberDear Melinda – Thanks so much for the great wishes and the positive juju as Lainy would say !
I will definitely scour the list of Trials you sent to investigate – I am a big believer there is always something and you just have to look to find it!
Dear Kingston – much of your journey sounds very much like our own – the FUDR immediately seemed to reduce the size of the main liver tumor significantly, and then kept in check until it didn’t. I can’t help wondering whether we got off it prematurely, or should have returned to it after the Agios trial was unsuccessful. But the consensus was that because of the extensive spread of tumors everywhere, we needed a different approach.
My thoughts are with you and I wish you the greatest success.
Dave was accepted into the CB-839 trial and started Friday. He has had 5 doses so far so we are keeping toes, fingers everything we have crossed.
Thanks all as always for your kind wishes, support, help, prayers and for the love you share with all the family members.April 16, 2015 at 11:42 pm #87558kingston2708SpectatorI’m a patient at MSKCC, too. I had the pump implanted, did the Gem/Ox seven rounds, FUDR in the pump. Nothing but good news, shrinkage in the one tumor I had in liver. Developed an allergy to the Gem (rash all over), so we stopped the GemOx and scanned again in 12 weeks. In that time, I developed tumors in my lungs and lymph nodes. Now I am stage 4. We did the genomic tests and I’m waiting on the results now. I hope you find your way. I’m looking into my options now, too. Not sure if I’ll stay with MSKCC as the travel is a big expense for me.
April 16, 2015 at 7:24 pm #87557mbachiniModeratorDear Sandy,
What an incredible ride you and your husband have been on! I would just suggest checking the clinical trials link http://cholangiocarcinoma.org/professionals/research/clinical-trials/ to see if other trials come available. Please keep us updated on your husband’s progress. Sending good thoughts and prayers your way!
MelindaApril 7, 2015 at 5:07 am #87556lainySpectatorSandy, you betcha! I am crossing everything I own and sending good vibes and great juju. You both deserve some good news and will gladly take a new trial, I know. Perhaps some of our family knows of some newer trials they can suggest.
April 7, 2015 at 4:50 am #87555sandynycMemberThanks so much Lainy! You are the best and you always bring such positive energy!
Keep those prayers and cheers coming.April 7, 2015 at 4:39 am #87554lainySpectatorDearest Sandy, so good to see you here again but my goodness what you both have been through. You are tough fighters with great attitudes and here is hoping and wishing that Dave gets in the new trial and it works. It sounds like your team is one of the best and I am just not sure of what you could do next. Then again, as Duke says he has a plan B,C,D,E. etc. Your post, I am sure, will be beneficial to others and I am proud to “know” such a dynamic duo. I sure hope Dave is accepted! I know you will let us know and in the meantime there is a large cheering section for you both!
April 7, 2015 at 4:16 am #11112sandynycMemberHi All- I haven’t posted in a long while – but I read everything on this site every day – sometimes it makes me scared, sometimes angry – but lots of times it does give me hope – and it always fills me with wonder at the compassion, caring and love you all share.
My husband Dave was first diagnosed with CC in May of 2013 and what a “long, strange trip it’s been”.
After multiple opinions, we settled in on MSKCC (Memorial Sloan Kettering).
From when we first found the tumor in his liver, to when surgery was scheduled, the tumor grew from 9 1/2 cms to 14 cms.
Dr Fong operated but determined that a resection was not possible, due to several satellite tumors – he determined there was not sufficient good liver to regenerate. He burnt off as many of the satellites as he could. At the same time, he also implanted an intra-hepatic pump which would be used to administer Chemo (FUDR) directly to the liver.
We then met with the Oncologist, (July 2013), Dr. Kemeny who would be administering the FUDR into the pump while also administering systemic chemo, Gem/Oxy every two weeks. Dave tolerated the Chemo treatments very well and experienced minimal side effects.
They always told us a time might come where the Chemo would stop working.
After losing 35 pounds over the first few months, and barely getting out of bed due to being so tired and short of breath, all of a sudden it was like a switch had been flipped and Dave came back to life, for the most part pain free and energetic. And the weight came back along with his appetite.
Dave remained on the regimen until December 2013 when they found that the cancer had spread to his left lung (very minute) and ribs – the pain was excruciating as it had penetrated the bones –
He had surgery Christmas Eve (also the eve of his birthday) – they removed ribs 5,6 and 7 and put in mesh to protect the now exposed chest cavity. They also cut some of the lung to insure there was no spread from the bones. The recovery was very painful but the relief of getting rid of the ribs provided enormous – going forward they added Exgeva to the regular treatments to protect the bones.
2014 started off so much better – After all the pain, exhaustion, shortness of breath, Dave really enjoyed a quality of life
After about 9 months of the Gem/Oxy cocktail, neuropathy began to set in so the Oxy was replaced by Teecan (Irinotecan).In November 2014 after 17 straight months of Chemo every other week, our Onc, , Dr. Kemeny determined based on a CT Scan that the Chemo was no longer working – the spread to the Abdomen had become extensive, and the 2 newest Liver lesions had doubled in size. The original liver tumor which had been reduced dramatically in size and then dormant, had begun to increase in size again.
The tumors in each lung remained unchanged and very small.
At this point we began to review the results from the Gene testing done earlier in the year to explore the availability of Clinical Trials.
Our Onc determined that the Agios AG-120 trial was a strong option, as it was targeted at IDH1 mutations, the exact one that the testing had identified. IDH1 mutations appear to be present in about 35% of CC patients, and particularly present in Patients with longer survival rates,
Unfortunately we had to wait a minimum of 3 weeks from treatment to even be considered for any Clinical Trials so Dr Kemeny suggested we cease treatments immediately in order to be ready should a spot become available. Unfortunately MSKCC did not get the spot they anticipated getting in December, but January 2015 we were informed a spot had become available and it was Dave’s!!!
We couldn’t have been more excited as this Trial seemed so promising for Dave’s particular mutation.
We started on February 1st. As per the trial guidelines, we reviewed CT scans and bloods on the 56th day – unfortunately the liver tumors had continued to grow and Dave was feeling considerably weaker, and very short of breath. So the decision was made to take him off the trial.
We revisited the possibility of putting Dave back on chemo, but the Onc was concerned that might preclude Dave from being considered or eligible for any other trials.
Today we met with another Doctor and his team who was also running a trial : a Glutaminase Inhibitor CB-839 targeted at Patients with advanced Solid Tumors.
We are awaiting confirmation Dave is eligible based on recent PET scans, biopsies and bloods.
If accepted, we begin next week.
What else should we be considering? -
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