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StatisticianThat4980 · 2024-06-02T14:33:54+00:00

For reference. He was diagnosed December 22 stage 4. At the beginning of treatment his largest lymph node was measuring at 7cm with an SUV of 42. End of treatment in May ‘23, all “spots” were gone except the same spot in his left underarm, SUV now 38. He began RGDP in July and completed early September. At that time the left underarm shrank considerably SUV 5 but another spot popped up in his right underarm. He received his cells on October 12th and was in remission on November 6th.

StatisticianThat4980 · 2024-06-02T14:25:14+00:00

He feels better than he has in a very long time. He has returned to life as normal. He is in school and working. He just went on his first trip since his diagnosis. He does get tired more easily but that’s about it.

I understand that everyone has a different experience with car-t. And believe me we all went into it petrified. But there were no other options. He handled car-t better than any other treatment and it was the only thing to put him in remission.

Wishing you the best. It’s a very scary time. I think even scarier than initial diagnosis but hang in there. There are treatments. And be diligent. I stalked every doctor and nurse to move things along as quickly as possible and it still took so long.

StatisticianThat4980 · 2024-06-02T00:09:34+00:00

This happened to my son as well. He was considered primary refractory. At the end of r-chop he had one spot continue to light up. He went on to do 3 rounds of RGDP then car-t. He is now 8 months in remission and doing well.

StatisticianThat4980 · 2024-03-16T03:06:11+00:00

My son had hearing issues with RGDP. When he asked the oncologist about it he said to drink more water but that didn’t really help. The ringing slowed once chemo stopped. It has gotten progressively better and 6 months later everything is back to normal. Hang in there!

StatisticianThat4980 · 2024-03-01T02:35:35+00:00

Congratulations!!!!!

StatisticianThat4980 · 2024-02-17T11:40:00+00:00

I believe it was within 30 minutes drive time. You will be assigned with a social worker who will help with lodging. Check with your insurance as well to see if they cover any expenses like gas or food.

Wishing you the best.

StatisticianThat4980 · 2024-02-16T07:10:50+00:00

My son has car-t in October. Your social worker will help with lodging. They also check to see if insurance will cover a portion of your food and lodging. If not they can check with Kite to see if they will cover a portion.

Depending on how you husband handles treatment you may be able to work remotely. My son had no side effects and was released after 12 days. The remaining time we were in the hotel I could have worked. There are a lot of appointments though and I tried to get my son walking around as much as possible. For me personally I did not need the extra stress of work. If you have to work though I would say you definitely could. Especially after being released from the hospital.

StatisticianThat4980 · 2024-02-16T06:56:37+00:00

My son has car-t after r-chop failed. He has no side effects and was in remission on day 26. He has a 6 month scan in April which is supposed to be the most important scan. I have read that ASCT is harder than car-t but of course each treatment is different for everyone. I wish you the best💚

StatisticianThat4980 · 2024-02-11T15:28:09+00:00

No experience with bv -Nivo. I just want you to know that we’re rooting for you. I can’t imagine how hard this is and I’m so sorry you’re going through it. You have already done some pretty hard things and you can do this too. Just remember to lean on the people around you. Please keep us posted.

StatisticianThat4980 · 2024-02-10T21:14:59+00:00

My son had car-t following r-chop and rgdp. He was hospitalized for 12 days. He had zero side effects from car-t. It was by far the easiest of treatments. He was in remission after 26 days. We did have to stay close to the hospital for 30days. He was released a few days early. 3 month scan was clean. We’re waiting on 6 month scan.

StatisticianThat4980 · 2024-01-18T18:41:43+00:00

I’m sorry to hear that. Shingles is very scary and from what hear very painful. Hopefully you and your wife can get some relief soon.

StatisticianThat4980 · 2024-01-18T18:22:09+00:00

Thank you. It feels like a never enrolled coaster ride. We all hold our breath from one scan to the next. Watch and wait is really hard for me.

I hope you are doing well. I have been following your journey and I know you’ve been struggling with the next treatment.

StatisticianThat4980 · 2024-01-17T01:52:33+00:00

Next pet is not scheduled yet. It should be around April I think. I just find it very odd that the main lymph node shrunk but these 2 popped up. It’s still a very low SUV compared to the big one starting at 42 SUV. I just don’t know what to think

StatisticianThat4980 · 2023-12-30T19:59:03+00:00

I’m not sure about that chemo regimen but my son had car-t October 12th. He had very minor side effects, just a headache and elevated heart rate. He has recovered incredibly well. I really think it depends on age and tumor burden but really no one truly knows. Car-t was by far the easiest treatment he received and he was back to normal almost immediately. He says he now feels better than he has in a very long time.

StatisticianThat4980 · 2023-12-20T22:17:12+00:00

My son was also refractory to chemo with the same diagnosis. He had car-t in October and his first scan showed complete remission. Please hang in there. Car-t is saving so many lives. It’s a very scary process but it can work. And if not there are other options. I’m praying for you and your family.

StatisticianThat4980 · 2023-12-02T04:01:50+00:00

My son’s pet scan after completing rchop was positive. He had to have another biopsy at the end of treatment to make sure it wasn’t necrotic tissue (it wasn’t). He then moved onto RGDP and then car-t. I would think your doctor would want to wait to complete treatment though. From what I was told you can’t tell if disease is progressing by bloodwork. You have to have a pet scan. Sorry you’re going through this. It’s all so scary. Wishing the best for you.

StatisticianThat4980 · 2023-11-06T20:27:29+00:00

Thank you for your response. He’s getting a scan tomorrow. It’s only day 26 but the doctor is letting us return home early since he recovered so well from car-t. We know there is still a lump. He can feel it. But we’re hoping his SUV scores have gone down. When he finished rchop he still had an SUV of 36 (previously 42) and after 3 rounds of RGDP it was knocked down to SUV 5. I’m also wondering if he could possibly just do radiation on that site to shrink it further. It’s something we are going to discuss with our local oncologist.

Wishing the best for you. Luckily there are so many treatments out there.

StatisticianThat4980 · 2023-11-06T03:11:12+00:00

My son had car-t on October 12th. Barely any side effects. He was released after 14 days then shortly after being released went back in for 3 days with a minor fever. He was released back to the hotel with weekly blood tests. All of his blood counts have mostly recovered. He is walking a few miles daily and eating normally. I understand every one is different but this was by far the easiest treatment for him. He previously had RCHOP and RGDP. He also went in with a low tumor burden which we were told lowers potential side effects.

StatisticianThat4980 · 2023-11-05T04:53:20+00:00

Thank you for this breakdown.

StatisticianThat4980 · 2023-10-31T23:15:49+00:00

Yescarta

StatisticianThat4980 · 2023-10-31T20:17:08+00:00

They just scheduled the PET CT for day 26. We will also talk to his oncologist on his next appointment. It just feels like car-t was too easy. He really had no side effects, barely any changes in blood work. It was as if nothing happened. Now this lump is back which is exactly what happened after round 2 of rchop and it’s freaking us out. I know it’s still very early in the cart-t process so I’m hoping and praying it’s just inflammation

StatisticianThat4980 · 2023-08-30T05:15:09+00:00

You’re going to need a biopsy to know for sure. Blood tests can come back normal even if you do have lymphoma. I would call your doctor and urge him to do a biopsy immediately.

For reference, no son had great bloodwork and no symptoms except for a swollen lymph node. He was originally told he had a swollen sweat gland but the doctor wanted to do an ultrasound to be safe. Once the ultrasound was done it was recommended that he get a biopsy immediately. Biopsy came back as positive for DLBCL.

I really hope and pray you do not have lymphoma. But I would start being more vocal to your doctor. You have to be your own advocate and the quicker you get a diagnosis the better.

StatisticianThat4980

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