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Pseudoprogression in Immunotherapy

Dak82's picture
Dak82
Posts: 78
Joined: Dec 2020

I haven't done an update other than scatter some comments on other threads. I had my second Jemperli infusion last week but because the GO didn't like sounds--or lack ther of--I was scheduled for a CT scan which was today and results were posted within hours. Not pretty. The only good news was I have no blood clots that could kill me. Thankful for that.

But several of the nodules in my lungs grew dramatically--from 6mm in April to 3.8cm today--in only 3 months. Also my mediastinal and HILAR lymph node have grown to over 1cm in some cases. Throw in pleural effusion and evidence of a partially collapsed lung on the right lower lung lobe and it was a distressing report. The GO who requested the scan was not in the office today but her nurse called to say no PE but yes disease progression. The GO who was in mentioned this progression could be due to the immunotherapy. 
I did some research on what is called pseudoprogression which may occur when the hyped up immune system attacks the tumors and gives the pictorial representation that the tumor has grown. And the lymph nodes would swell just like they do when you have a sore throat. There is really no way to distinguish between pseudo and true progression. The key is to continue immunotherapy treatments for up to 6 months. I had my first Keytruda dose on 12 May and moved to jemperli on 22 June. So I only have 40 days time for this stuff to do it's thing.

My friend reminded to keep taking things one day at a time and often things get worse before they get better. I admit to being gonsmacked when I read the radiologist"a report. I have embarked on a mostly veggie and fruit-based diet. I felt like I was justgoing along for the ride and needed to do my part more actively. So I've had adventures in juicing with beets, carrots, celery, ginger root and green apples. Actually not bad though beets are not my favorite food. Also big salads with lots of stuff in them and fruit smoothies--with leafy greens thrown in. I need to find more hours in the day. I read the book "Chris Beat Cancer" and while I don't ascribe to the whole approach I was intrigued with the diet. I haven't had anything work so far so why not try this!

I'm feeling ok, still coughing (very productive!) and feeling some fatigue. The ureteral stent is putting a crimp in my bike riding but managing to do some a few times a week. 3-5 mile walks up and down our "Rails to Trails" path are the norm most days although 100 degree day temps mean early mornings or late evenings. Two of my sisters are coming to visit--one for the first time ever! So happiness too.

I wanted to keep documenting my immunotherapy treatments for those who may find themselves needing to "hit a home run". Hopefully none of you need to go this route except those like Alicia using it as a maintenance therapy. Mine is palliative at this point.

Hope all of you are having a great summer in 2021!

Deb

alicia2020
Posts: 162
Joined: Sep 2020

you would get good news, Deb. I'm so sorry. 

l've never heard of pseudoprogression, but it makes sense. And it offers you hope that the therapy is working! I hope you can get better answers when you actually talk with the doctor. You've always been so good with your research and looking for answers. You are to be admired for your strong attitude.

I'm glad you're feeling slightly better and that you have something wonderful to look forward to with your sisters coming!

Please, keep us updated with how you're doing.

Love, hugs, and prayers, 

Alicia

Dak82's picture
Dak82
Posts: 78
Joined: Dec 2020

Thanks Alicia I too was hoping to get some indication of success. I don't do math very well obviously since we've been at this immunotherapy thing for 70 days not 40. But I have no idea how different jemperli is from Keytruda. So I hold out hope that the jemperli just needs more time to work.

Take one day at a time!

Deb

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1795
Joined: Jun 2015

Deb, thanks for the update and I truly wish it was better news.  I'm choosing to believe it is better news and that the immunotherapy is working its magic. It is impressive that you are still walking that many miles. 

Thanks for sending us the update and please let us know how you are doing. Your information is priceless!

Love and Hugs,

Cindi

Harmanygroves's picture
Harmanygroves
Posts: 217
Joined: Jun 2021

Like Cindi, I choose to believe it is better news.

Deb, your information is very helpful, and I feel connected to your situation for a number of reasons. We share a love of sports, and we share a name. 

I am also moving toward primarily fruits and vegetables. I met a woman from India recently and shared my health situation, and she grasped me by both hands and stared in my eyes and said, "Starve it out. One meal a day, and the most nutritious foods you can eat. No meat. Lots of greens and colored fruits and vegetables."

I'm no pro on nutrition, but I can't help but agree with her that Intermittent Fasting, implementing one meal a day, is probably the best route for me---and for others. 

We all benefit from your sharing of information. Thank you deeply. You're such a sharing and generous person, and I truly hope that this is indeed progress in disguise.

"The other Deb"

Dak82's picture
Dak82
Posts: 78
Joined: Dec 2020

One benefit of fruit smoothies, salads and juices is I've lost 3 lbs. my doctors will likely have a cardiac over that so I have to figure out the right mix of foods!

Thank you for the encouraging words!

Deb

Harmanygroves's picture
Harmanygroves
Posts: 217
Joined: Jun 2021

Are you a person who loses weight easily?

I am a big jealous over your weight loss, but again, you do appear trim and fit. In all my research, it suggests that less body fat and more exercise are better for those with cancer issues. 

Unfortunately, I can't seem to lose weight. I was twenty pounds lighter a year ago, and I'm not enjoying this extra-robust version of myself. I'm working on my diet, and have mostly omitted meat. I'm eating much less, and drinking much more water. I do have a few bad dietary habits (cream in coffee, not good, not good), but I think I'll take a page from your book.

Will your doctor consider you too slender? Have you discussed your new juicing and greens habits with the doctor, or did you just move forward on your own? As another Deb (we are independent!), that's what my move would have been : )

 

Dak82's picture
Dak82
Posts: 78
Joined: Dec 2020

I considered myself very fit and maintained my weight pretty easily in pre-cancer days. I trained to do triathlons--the day before my surgery I ran 10 miles which May go down as the last long run in my life! Nonetheless I have a reserved spot in the July 2022 Ironman Lake Placid event. I keep hearing to plan for the future so I do.

I moved out on this on my own. My husband watches my weight so he won't let me be too stupid. I am short, only 5'2" so weighing 115-120 is not outrageous. I k ow I need my energy to figjt the cancer. I will tell you that juicing is hard work and finding the time to do it all is hard! My husband prepped all the ingredients--he is on board with this but I am adding fish to my dinners.

Deb

Harmanygroves's picture
Harmanygroves
Posts: 217
Joined: Jun 2021

My guy has no idea what I weigh, because as a robust woman, I've never shared my weight with him!

I did triathlons about ten years ago, but I was dealing with exercise-induced asthma, so now I hike and bike and call it good!

My big whoop-de-doo was 2015, when I walked 500 miles in 41 days--the Camino de Santiago. I loved it so much I did three more long-distance walks in the following two years, with short walks and hikes between. I love going someplace and doing several days of distance walking--200 miles, 100 miles. 

I've done that in Spain three times, and also walked the West Highland Way in Scotland, a rather strenuous 100-miles. Husband did that with me. I am glad to know about your ironman goal. 

I have a cousin by marriage in your age range who competes in triathlons all over the USA. Wonder if you have met her? Her name is Jeri and she is very talented. 

 

jan9wils's picture
jan9wils
Posts: 161
Joined: Mar 2017

I  haven't had the medications you have had. But I was in a clinical trial for an immunotherapy drug in 2019. I was told pseudoprogression was a possibility.  My tumors grew while on the trial and I had other complications so I was taken off of the study. I had the ones in my abdomen surgically removed as they were quite painful and interfered with my ability to keep my core strong. During the trial I developed a tumor on my liver that we decided to watch. In the two years since I was dismissed from the trial the tumor on my liver has not grown and I haven't had any further tumors form that can be seen by CT. This is the longest I have gone with no cancer growth. So I guess I would encourage you to see if the treatment will work further down the road.

Jan

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