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Been awhile - long post

DBM

Member
It has been a long time since I posted because things got confusing about 2 years ago. Two years ago in January, after a year on W&W following his second relapse, my husband Al developed jaundice due to a blocked bile duct caused by a mass around his pancreas. We went back to Johns Hopkins and, after putting a stent in to address the blocked bile duct, they administered RICE as the first step to a haplo SCT. For the first time in his treatments, he developed an e-coli blood infection and spent another week at the hospital. At the first scan to monitor the RICE results, his doctor said the tumor in his abdomen, which was being monitored during W&W, had shrunk as expected but the mass around the pancreas had grown. They were concerned they were dealing with pancreatic cancer and not lymphoma. Then we started on a journey to get cells for biopsy. Al had 3 endoscopic procedures, laparoscopy and finally, was opened from neck to groin by a pancreatic cancer surgeon. In all cases, all they got was inflammation cells….no cancer cells. So, in April, 2018, we looked at the surgeon and asked, “what’s next?”. He said,well, if this is pancreatic cancer, and my gut says it is, you have about 6 months because it is Stage 4 in the liver.

So, we left and didn’t go back. Al was weaker and sicker than ever before after the jaundice, RICE and e-coli infection and I thought we had reached the end. `But instead of getting sicker, Al kept getting better and stronger. He decided he would not return to the doctor until he felt badly. In the 20 months since we walked out of the hospital, he had perfect health and we took full advantage by traveling widely. After years on the cancer journey, we really enjoyed not having looming doctor visits and scans. It was a nice break.

But I could see Al’s energy down in January and his appetite diminished. In February, he finally admitted he did not feel well and we visited his GP for blood work and a CT scan. The doctor called to say the scan shows a mass in abdomen and around the liver and referred him to a local hematology oncology group. (After moving further south, we are reluctant to return to Johns Hopkins which is 3 hours away.)
Then we got another call to say we needed to go to the ER because the blood work showed dangerously high lactic acid levels. Other than the lactic acid and slightly low red blood cells and very high lymphocytes, the only other bad number is elevated Alkaline Phosphate.


That brings us to now. Al has been in our local hospital since Thursday night to address the lactic acid. On saline IVs, it has come down to 4.8. His abdomen is very distended and they drained over ½ gallon of fluid yesterday. We have a first appointment with the local hematology group on Thursday but a physician from the practice on rounds came to speak with us yesterday. I appreciated that he agreed with me that we need to start treatment for what is almost certainly a lymphoma relapse very soon. (I was concerned we were in for a long work up as new patients.) He ordered a port and PET for Monday.
He discussed possible next steps which includes R-squared and BO (bendamustine/obinutuzumab) were mentioned. I asked about cart- t and he said he would see if there is a trial available. Al has ruled out the SCT and I understand.

I am looking for reassurance that we have options and there are some good years left for this formerly healthy, 73 year old, heavily treated, survivor at the start of his 4th relapse. The whole issue is complicated by the difficulty in getting a good biopsy. It has never been easy for Al and his last successful biopsy was obtained about 6 years ago by collapsing his lung (his 2nd thoracic surgery for a biopsy).
 

andym

Super Moderator
That's quite a journey and I'm glad that it included some really good times. It sounds like you made some excellent decisions to get the most joy out of life.

B-O is going to be somewhat similar to the B-R he already had but B can be used multiple times and changing the antibody could change how it works for him. R-squared is a bigger change in how the disease is attacked and can also work really well. It got me into remission really fast when I relapsed after my transplant. So you definitely have good choices to attack the disease.

I would suggest continuing to consider SCT but maybe not the myeloablative transplant that he was moving toward a few years ago. After getting into remission with either R-squared or B-O, it could be that a non-myeloablative transplant could prevent further relapses. But it is a very difficult and personal decision that needs to consider all of our very individual situations. When I was facing that decision I had gone through a lot of treatments but I was almost 20 years younger than Al is now. And CAR-T is definitely further along that it was when I faced the decision 6 years ago. So I don't know if I would make the same decision now.
 

fighterm

Member
I had my last treatment in July last year, but did not get into remission. No treatment since then. Now I am also not feeling great, so will see tomorrow my onc. And I am close in age to your husband. I know for sure that I don't want any myeloablative chemo, so I want a trial of a bispecific antibody cd20/cd3. The mechanism is somewhat similar to car T cells in what this antibody redirects T cells to cd20 lymphoma cells. No myeloablation is needed. There is another bispecific antibody in trials, cd19/cd3. But that one is not running at my cancer center. Just to give you some ideas that you could discuss with your doctor. The bispecific antibodies are a big thing now. The ones that have cd3 specificity ate T cell engagers, they redirect T cells to cancer targets.
 

zac495

Moderator
That's tough. So are they treating lymphoma or pancreatic cancer?
All my love to you and Al. I always think there's hope. Cart T is available at some hospitals if not all. Could you travel if need be?

HUGS
Ellen
 

DBM

Member
Thanks, Andy. You always give hope. Fighterm, I appreciate your sharing your trial search. I will bring this up to the doctor as we discuss options. Ellen, the docs believe it is best to proceed as if this is lymphoma. He was healthy for 20 months after a single RICE infusion last time. if it was stage 4 pancreatic cancer, that would not have been the case.

He is being released from the hospital today so we can get on with treatment. This was my first experience outside Johns Hopkins and I was shocked to discover we can’t get the port and PET ordered by the local oncologist until he is released from the hospital for insurance reasons.

They drained his abdomen of a 1/2 gallon fluid and checked for infection...there is none. I am most anxious to hit this thing as soon as possible because he is very weak and sick. Lactic acid blood levels are still very high which is causing the weakness. Just a few weeks ago he was walking miles every day so this came on suddenly and hard.

I regret not loading him into the car and heading back to Johns Hopkins.
 

DBM

Member
Al had a dose of BO (bendamustine omitzumab?) last week and feels much better already. When his nurse did his lab 2 days later she was amazed at how his liver numbers had dropped. She said she had been worried because she had never seen any so high. Think she was referring g to ALK which was around 7000 and is still 1000. The doc just called and said the liver biopsy has been sent to Mayo because the local pathologist thinks it is transformed to DLBCL. Not sure what is available to treat it. Al has had his lifetime RCHOP. The doc doesn’t think he is eligible for CAR-T u til he fails a DLBCL treatment.
 

andym

Super Moderator
It sounds like the BO is doing good things for him. That would be great.

I wouldn't go too far down the which treatment to choose consideration until Mayo gets back to you on the biopsy. Lymphoma pathology is very tricky and the local place was wise to get an expert opinion. After that, you can look at the nccn.org guidelines for b-cell lymphomas to see the range of choices.

And, if it is transformed, then maybe the CAR-T requirements can be adjusted given that he has already had R-CHOP.

See there I go doing it. Let's wait for that pathology report.
 

DBM

Member
It sounds like the BO is doing good things for him. That would be great.

I wouldn't go too far down the which treatment to choose consideration until Mayo gets back to you on the biopsy. Lymphoma pathology is very tricky and the local place was wise to get an expert opinion. After that, you can look at the nccn.org guidelines for b-cell lymphomas to see the range of choices.

And, if it is transformed, then maybe the CAR-T requirements can be adjusted given that he has already had R-CHOP.

See there I go doing it. Let's wait for that pathology report.
 

DBM

Member
Al’s biopsy showed that the lymphoma has transformed to DLBCL and as he was quite sick with scary high liver enzyme issues, we moved onto RICE. He had one round 2 years ago and while it was miserable, he did fine. This time he developed neuro toxicity almost immediately and landed in the hospital for 3 weeks, followed by 2 weeks in rehab.

Was it because nothing was draining due to the liver and biliary tree being blocked by tumors? The doc seemed mystified and had no suggestion of why the treatment hit him so hard this time. It was a scary time but the good thing is that while RICE almost took Al out, it also had an immediate impact on the lymphoma and his liver numbers returned to normal. He lost the dreadful fluid build up.
We had a consult at VCU and are moving to CAR-t. Still face some hurdles. Al has to improve his cardiovascular health and gain strength. He is working on it daily. He will have 2 rounds of R GEMOX starting this week, a scan that has to show response and then to VCU in mid June for testing. Feeling some hope but so many hurdles to get through!
But for now it is encouraging to see him able to eat and on the exercise bike for a slow 30 mins at a time. Today at least is a good day.
 

andym

Super Moderator
Thank you for the update about what has been a very difficult time. Yes, there are a lot of hurdles but one day at time can get us through. And CAR-T has done such great things for so many people who were having trouble finding a way back to remission and health. I truly hope he is yet another great story for that approach.

Keep us up to date when you can and here's to Al for keeping pedaling.
 
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