Devastating update

npatel22526

Hello All,

I don't write much here but periodically update here with all our optimistic approaches but now it feels like we may have reached close to the end.

Here is my last post where we hoped he get liver surgery and the doctor was super optimistic that he can do it .https://csn.cancer.org/discussion/323532/dads-update-pve-and-second-opinion#latest

Following the discussion, we had a PET scan done at end of the July which found a positive lymph node shattering all the hope for Surgery and transplant. At that point, the Surgeon said surgery is too risky because his spleen is enlarged due to pressure caused by his PVE.

The PET scan also revealed that his current regimen is not working so after 2 months of Hessel we managed a clinical trial drug named Tukysa for HER2 positive colon cancer but his CEA kept increasing (CEA = 372, in November) while on the drug so it seems that he keet progressing from August to Now.

To make the matter worst, a recent bone scan showed metastasis to the iliac bone and CEA is up to 618 during the recent test. The oncologist suggests looking for a trial as 4 lines of treatment didn't really work. So I am in search of trials, hoping to find something

We never really had a conversation ( neither with the Oncologist nor with my dad ) on how long he had left because I never wanted to stop looking for options. But during a recent conversation, I mentioned his wish to go back to India for a few weeks, however, the oncologist was concerned due to the COVID situation all over the world. But when I asked if he doesn't go this time when he will, to which she said probably never, and

The two words shattered me, I am unable to handle my thoughts, how do you deal with the situation when you know he will be here for only a small time?

SandiaBuddy

Nihir, this is obviously a very tough time for you and your family. I have no insights to offer on treatment and can only offer sympathy for your situation. I do hope that your Dad can make the trip to India that he desires, and perhaps you can accompany him. Every moment we have is precious, and that feeling is more intense when the moments may be limited.

janh_in_ontario

Make the most of every single minute. If he is physically able to go to India - go! Don’t live in fear - what is the worse that can happen? Figure out that answer, have a plan for it and go!

i lost my Dad 1 year ago. I wasn’t even allowed to go to his funeral in another province.

the powers that be are cruel - absolutely mental torture.

Enjoy every minute - don’t count them and don’t waste them worrying about the last one.

feckcancer

Imugene (ASX: IMU)

Clinical Trials — Imugene (ASX: IMU)

I don't know if this is helpful to you but their results so far seem to be promising.

Take care

abita

Keep up hope. I ran out of approved options, and I just started a trial. I talked to some people in trials for other cancers, and they said they have been going from trial to trial, and it has kept them going for years.

npatel22526

https://csn.cancer.org/discussion/comment/1691993#Comment_1691993

Thank you. Yes, yes if he is going I will be going with him.

npatel22526

https://csn.cancer.org/discussion/comment/1691996#Comment_1691996

That's great advice, I do feel confident on taking him. Now when I thought about it seems that the worst would be not to take him.

Sorry for your loss, I hope time is healing somewhat of it. I can feel your pain about not seeing loved ones, COVID indeed is the worst devil, I've lost my beloved grandmother last year and they didn't let anyone near her for 7 days, while she lost her memory, was confused, and scared in the hospital.

npatel22526

https://csn.cancer.org/discussion/comment/1692004#Comment_1692004

Thank you very much this looks quite promising. I will keep everyone posted if we manage to get into one of this trial.

npatel22526

https://csn.cancer.org/discussion/comment/1692010#Comment_1692010

Thanks, Abita.

I really hope that is the case, I am actively looking for trials, Looking at him no one can even think that he is fighting such a deadly disease, hoping something would work out for him.

npatel22526

Thanks everyone for your thoughts and help, I will certainly keep everyone posted.

SandiaBuddy

https://csn.cancer.org/discussion/comment/1692015#Comment_1692015

Book the trip. Drink some wine. Eat some ice cream. Walk on the beach or near a river. Ask your father the questions you did not ask him before. Live.

Real Tar Heel

I don't think we've ever exchanged messages on here. My CEA keeps going up but my tumors are stable and have been for 6 months. I'm My CEA is a little lower than his but my docs refuse to call it a progression until they see movement on the tumors. My family has been urging looking into transplants (I am mCRC to liver) but ironically I don't have enough tumors to consider that at this point. Will be looking into trials and such, we will see.

I would like to get back to my wife's home country before I kick off, really like it there. But that's just one longevity goal I have. I give myself things to look forward to, maybe your father will benefit from a forward outlook.

npatel22526

https://csn.cancer.org/discussion/comment/1692039#Comment_1692039

Yes, we didn't communicate before, I wasn't much involved with the forum, had too many things going on but I made some adjusted so less occupied now.

Thanks, I am going to discuss with the Oncologist to see if we can continue the drug a little longer because his CEA didn't increase much in the last 3 weeks and bone lesions were likely were there since PET scans in July.

It's sad that one doesn't qualify for too few spots but just be cautious that if at all it moves outside of the liver they may not consider it, at least that was the case with my dad, two months I prepared myself both physically and mentally to donate a part of the liver and hit the wall as soon as the PET scan results came in.

If you are around the tri-state area check this out, I met with the surgeon a couple of times, even if you are not close to him, he and the team responded well via email and call https://clinicaltrials.gov/ct2/show/NCT04742621

Feel free to message me if you need any additional information.

feckcancer

https://csn.cancer.org/discussion/comment/1692013#Comment_1692013

Seems like they are recruiting for some trials in India. Maybe you can do both.?

Also here are some other links from around the world. No harm in getting in contact with them to see if they have any ideas.

About us: The AGITG and GI Cancer Institute Australia

Akesis Life - An Integrative Oncology and Lifestyle Center (akesisoncology.com)

Home - Gillies McIndoe Research Institute (gmri.org.nz)

Malaghan Institute of Medical Research

Stay safe

npatel22526

https://csn.cancer.org/discussion/comment/1692094#Comment_1692094

Hey, Thanks again for all the information.

I checked trials in India from Imugene he is not eligible for the trial mostly due to his previous HER2 therapy, as well contact them via Email for the Vaxinia trial which is approved in USA but hasn't started.

Meanwhile, visited MSKCC and after one week their research team said he is not eligible for any trial at the moment, asked if any particular reason they didn't find him a trial, like low Hemoglobin, high kidney number, waiting on their response.

Simuletnoulsy, I did research on my own and reached out to an investigator who led the trial for the medicine that we tried (and failed), and from that came a suggestion for a trial drug (Enhertu) that he might be worth a try for him https://clinicaltrials.gov/ct2/show/NCT04744831. His oncologist was on it and got it approved from Insurance two days back

Since his bone Mets started causing pain, the plan is to do the radiation as well to start with the trial drug. So we are hopeful. Once he goes through a couple of 3-week cycle, will head to India :)

Real Tar Heel

https://csn.cancer.org/discussion/comment/1692705#Comment_1692705

good news that you have found something else to try. Hope the radiation is not too bad.

npatel22526

Hello All,

The radiation got rescheduled and overlapped with Chemo, met with multiple doctors, done blood transfusion but in the end we made it to India for little over 3 weeks and got back. He did amazingly well while we were there.

As of now, taking one day at a time and Continuing his treatment with the Enhertu, which is keeping his CEA stable

Can't thank enough everyone for courage and optimism.

abita

https://csn.cancer.org/discussion/comment/1695818#Comment_1695818

I don't think I have ever heard of that drug. Is it new? or a trial?

npatel22526

https://csn.cancer.org/discussion/comment/1695831#Comment_1695831

It's a trial drug for colon cancer but it's been studied/used in Breast cancer for a long time.

The drug is specific for a genomic marker that is Her2 amplification (Her2 +) . The marker is rare in colon cancer but does occur in 2-3% of CRC. Only a couple of people have that in CRC forum.

abita

https://csn.cancer.org/discussion/comment/1695832#Comment_1695832

That is fantastic when one finds a trial that works! I was in a trial for 4 months. It did not work but I am open to another trial if one comes up.

vivgrl

https://csn.cancer.org/discussion/comment/1695832#Comment_1695832

I also have colon cancer, Her2+.