Relapsed after 40 months in remission

[wmay13241]

Several days ago a CT/PET detected lymphoma progression wife (72) who was in remission since her CAR-T infusion in March 2016. Monday she will get a lymph node biopsy to see whether her follicular lymphoma has transformed into something else. Any thoughts on the next treatment?

[Wroxham]

I'm just so very sorry to hear this wmay.

Sorry but I cannot answer your question.

I would be looking to my Consultant for

answers.

My best wishes.

Sue

[PlanetaryKim]

Very sorry to hear this news, wmay. My best wishes to you and your wife as you go forward from here with next treatment.

[MsLockYourPosts Passed Volunteer]

I can't comment on appropriate treatment post CAR-T. I think you would need doctors with as much experience with CAR-T as possible. bkoffman may have good input. I would check the cllsociety.org site as well. It will be focused on using CAR-T to treat CLL, but may have good information related to your situation.

[Jm954 Administrator]

I'm sorry to hear of your wife's relapse. Future treatment will depend on what the biopsy shows and what her previous treatments have been.

There are still several treatments that could possibly be used if it's FL or even a transformation and your wife's Doctor will almost certainly already be planning his strategy.

Please let us know what happens.

With lots of good wishes

Jackie

[wmay13241 in reply to Jm954]

Biopsy showed only FL - stained 90% for CD19 - bone marrow was 40% FL. She received a 10 times larger NIH CAR-T cells (6e6 per kg) infusion on September 4. She was patient 2 on a doase escallation clinical trial so her first CAR-T was only 0.6e6, probably not enough to kill all the FL. The CSR was rough for 5 days then she started to improve. She feels much better now and will be discharged this afternoon. Thanks for everyones positive thoughts and prayers.

[Jm954 Administrator in reply to wmay13241]

That's good news, glad to hear it and I hope she continues to do well.

Best wishes

Jackie

[luciabon]

Hace she ever tried natural things? Ive found that people that got the lymphoma back mostly is due to poor diets... insufficient fruits and vegetables... a lot of animal protein which doesn’t help to heal the body... no exercise and no changes in her past lifestyle at all.. from a way to another she got cancer because of her lifestyle, diet, stress, toxins in products used in her hair teeth deodorant perfumes and also in the products used to clean the house there are thousand of reasons and thousand of changes she can make and make a huge difference... I really hope you find something else another treatment or even natural things! Supplements are also great... vitamin D3, melatonin, enzymes, vitamin b17, turmeric, probiotics, etc!

[Jm954 Administrator in reply to luciabon]

Hi luciabon,

I couldn't disagree more with what you are saying.

Yes, we should all try to improve our health, exercise and eating habits but life is stressful, we need to clean our hair/teeth and the house. Supplements need to be used with great care, bought from reputable sources and in discussion with your doctor.

I'm sorry but in my opinion, your explanation for her relapse (none of which is proven or true) only fuels feelings of guilt, distress and depression so it's not helpful.

Jackie

[AussieNeil Partner Administrator in reply to Jm954]

I agree with Jackie. As with CLL, we don't know the causes of follicular lymphoma, so assigning unproven causes to someone worried about what to do next does not help.

"Laetrile was given the fake name, “vitamin B17” to make it seem more natural, when of course it is not a vitamin at all." It can cause cyanide poisoning as described in the case study mentioned in this article about the dangers of using supplements, which are generally not regulated and hence often sold on the basis of false claims about cancer curing properties: sciencebasedmedicine.org/fa...

Neil

[wmay13241 in reply to luciabon]

Her oncologist is very much against OTC vitamins and supplements that he does not prescribe/approve. She has a good life style - walks 2 miles each morning, exercises in our gym 3-4 times a week, eats healthy, does not drink or smoke, drinks at least 64oz water/day, and tries to sleep at least 7-8 hours a night (hard to do with her horrible leg cramps when she lays down in bed (and yes her electrolytes are all in the normal range)).

[Yuck]

It is deeply offensive to tell someone she “got cancer” because of lifestyle, diet, stress, and toxins in over-the- counter personal and household products. You meant well, but I don’t think you’ve helped anyone.

Quite the contrary.

Good luck!

~ Yuck

[Yuck]

Best of luck to you and your wife. My comments above were meant for luciabon and all others who will get stressed after reading luciabon’s advice.

~ Yuck

[wmay13241 in reply to Yuck]

Like others responding to this post, I disagree with luciacon's advice.

[luciabon]

I wasnt trying to offend anyone... maybe I didnt explained myself in the proper way... what I am saying is actually a good thing and it is not offensive because we all didnt know about all this information about the toxins that producers of food and cleaning supplies won’t tell us... like I said before I wasn’t trying to offend anyone but the opposite and letting people know MY personal opinion and MY personal experience with FNHL information that has been actually veeeery helpful and I hope for some others will be too. I am sorry for those who where offended. I will pray for your wife so she will find her cure very soon. I would also recommend her to hear or read “dr joe dispenza” and see the netflix documentary “heal” it is good information. Last thing this information for me was exciting, it means Hope that it is actually on us too the way to reverse or stop growing cancer. I thought it could be too for people who come here to find answers. Sorry... wasn’t my intention to offend

[luciabon]

Hello wmay13241 how is your wife doing? I hope everything is getting better. 🙏

[wmay13241]

Thanks for asking Luciabon.

Gretchen had spiking fevers for 5 days following her new CAR T cells which were infused on Sept 4, 2019. Her CRP level also spiked way up due to the inflammatory fevers and reaction of her re-engineered CAR-T cells working. Her LDH also spiked upwards too during those 5 days. She only had tylenol and also given demerol for the shaking Rigors that went along with the fevers. When her fevers left, her CRP started to go down and so did the LDH. Each person is different and each clinical trial CAR-T can react differently in each patient. Best to ask your team of doctors any questions as they can answer best. Try not to worry about inflammatory signals going down as she would not want them to stay high for a long time. Her blood work and improvement in platelets and hemoglobin also show that her CAR-T is working in her bone marrow (40% FL). She is awaiting a PET scan in October 3 to tell whether the FL is gone. She is trying not to worry as stress is only something the cancer loves.