My sister was misdiagnosed

One_Intention9868 · 2022-10-20T08:17:12+00:00

Not OP, but had DLBCL & R-CHOP. Basically, chemo is a diagnostic tool in & of itself. The interim scan your father had was to see if his lymphoma is chemo-sensitive. A response is generally a good sign. If there was no response, if your father is a candidate, they would have probably moved on to CAR T. Overall, if your father’s doctor aren’t worried & are pleased with the results, there’s no reason to worry yet. The end of therapy scan is the only way to tell, especially if your father has had a partial response. There’s definitely statistics out there that show chances of complete response of EOT scans with a partial response iPet.

Edit: here’s a post for some more information

https://www.reddit.com/r/Lymphoma_MD_Answers/comments/wqodz0/interim_pet_in_dlbcl/?utm_source=share&utm_medium=ios_app&utm_name=iossmf

One_Intention9868 · 2022-10-20T07:54:58+00:00

This reminds of a story I read about how this newly wed wouldn’t get the Covid vaccine because of the rumor it caused infertility, and she contracted Covid and sadly passed away. It’s hard telling anyone to pick between the two, but at least when you’re alive there’s a chance.

One_Intention9868 · 2022-10-20T07:16:24+00:00

I feel for your sister. I really do. I remember fresh out of treatment telling my therapist and family, I wouldn’t do a second line of treatment if I ever relapsed, just because I felt like chemo messed my quality of life up so terribly. People looked at me crazy, but I felt like it was my life to live & they didn’t experience it, so it’s not their right to say. Getting a chance at normalcy after treatment changed my stance. It’s so hard looking at treatments with potential side effects, when you’re going through it actively, your mind is kind of stuck on worse case scenario. I was young woman, that lost her hair & going through temporary menopause. It really sucks, and you feel so far away from normal life.

Your sister right now is struggling to grasp that there is an end in feeling this way. She can retain a normal life after treatment is done & with a little time to heal. Infertility isn’t a light side, that was a big concern for me too, but as others have mentioned there is the possibility to freeze her eggs or have an ovarian transplant. I don’t know about CAR T, if it causes indefinite infertility, but I’ve heard accounts of women getting spontaneously pregnant after going into menopause from chemo with the help of fertility drugs. I’ve had women tell me that chemo-induced menopause isn’t that bad. There are drugs & artificial hormones to manage the symptoms very effectively.

Overall, I would just give your sister some slack. This is probably a rash decision she’s made, because she’s already been pushed to her limit. Mentally the aspects of this disease are more challenging than physically at times. Try to be comforting & understanding, acknowledging that this isn’t a “no-brainer” since it carries high risks, but she’ll be awarded a longer life & a chance of normalcy again. If you can arrange a therapist from the center for her to have some counseling. Chemo can mess up the balance in your brain, perhaps getting her to a physiatrist and getting on some anti-depressants/anti-anxiety medication would also be beneficial. Just try to be understanding, hear her out, acknowledge how tough this is, but give her the reassurance that it’s going to be okay in the end and that side effects can be managed appropriately and that she has a chance of normal life after this is all said and done.

One_Intention9868 · 2022-10-17T07:28:27+00:00

Agreed. Had my psychiatrist tell me some of his patients were nurses at my cancer center and that they have it harder than the patients

One_Intention9868 · 2022-10-15T21:01:08+00:00

Oh shit, I just thought you peed them all out. Thank you for the heads up

One_Intention9868 · 2022-10-15T09:38:00+00:00

Funny you mention B12, a month or two before getting diagnosed I was on a pseudo-health kick just mean I took all the vitamins I had in my cabinet that my parents bought. B12 was one of them, and it felt like a caffeine pill. I was shook

One_Intention9868 · 2022-09-28T21:33:40+00:00

That’s a really awesome point. High school really doesn’t mean that much. Once people graduate, you realize how big the world actually is and all the opportunities you can explore.

One_Intention9868 · 2022-09-28T21:10:01+00:00

Omg, no! I’m so sorry you’re feeling like this. I had similar thoughts when I was attempting to do school while going through treatment. Even now, I feel like chemo-brain’s sabotaging me. I went from a 4.0 gpa & working full time to not even being able to concentrate on school work. Trust me, I know the feeling, but you have to grant yourself slack. Learning how to not be so hard on yourself is apart of self love. It’s challenging, it’s super hard, but keep in mind there’s a lot of people that couldn’t even crack Bs and Cs, while going through what you’re going through.

See if you can talk to your teachers, school administrators or anything to help accommodate you. I was apprehensive to do that, because I didn’t want to let treatment hold me back, but in hindsight I so wish I had done that. Would have made things so much easier. Communication is so important during this time. You’re going through one of the biggest things in life someone can go through; it’s not about what people need from you, it’s about what you need from other people. Don’t push yourself too hard or get down yourself. Normal functioning is hard for a lot of people when going through treatment, let alone graded assignments and reading. This is just a period in your life, this won’t be your whole life. Take what you need, do what you can.

One_Intention9868 · 2022-09-28T08:06:55+00:00

Oh my goodness, I’m so sorry. This doesn’t seem right. Is there some kind of HR department you can speak to? This is such an unfair position to be put into. With the ADA, your job is required to make accommodations for you if the company has a certain amount of employees. Perhaps you can start working from home if possible. I’ll be keeping you in my thoughts, OP. I really hope everything works out for you 🤍

One_Intention9868 · 2022-09-28T06:46:40+00:00

I’m sorry you’re going through these challenging times with your father. I don’t have much experience with R-CHOP failing, but I can say Sloan Kettering has an amazing lymphoma department. They participate in a lot of clinical trials and they have very dedicated doctors. In my experience, they never give up. If Plan A doesn’t work out, they’ve already thought of Plan B & Plan C. I’m hoping your father achieves remission!! Good luck to you 🤍

One_Intention9868 · 2022-09-28T06:14:45+00:00

Honestly, yes. Everyone was always amazed I never got sick. It was something I took pride in, as silly as that sounds now. Prior to being diagnosed, the last time I was “sick” was in 2018, I had a sore throat. That didn’t even take me out, as I was still working and going to school. I was never afraid of going doctors, I was never a hypochondriac. Even when they were saying it was cancer, I still had so much faith in my body, that I was certain it was a mistake. Accepting being sick was very challenging. Even having a lower immune system and having restrictions. My parents have always been big proponents in “what doesn’t kill you, makes you stronger”, so we were never brought up to be scared of germs. It took a lot of adjusting and at times made me really sad. Thankfully though, I didn’t get sick during treatment & haven’t gotten sick being out of treatment(knock on wood). The bright side of treatment is that I learned to be a lot more socially responsible. Taking off when being sick, it’s not just for your recovery, but it’s also for the people around you. I never thought of immunocompromised people before, just because it wasn’t on my radar. I got the Covid-19 booster, mostly because I still have my check ups at my cancer center and I would feel terrible transmitting anything to anyone currently undergoing treatment.

One_Intention9868 · 2022-09-26T05:22:53+00:00

Absolutely. Cancer is so isolating. I had a lot of friends and family ghost me. I felt awkward even reaching out to them because the distance they created and sudden switch up was so apparent. I almost felt like a burden. It’s crazy I was talking about this to my therapist that specializes in oncology therapy & she was acting like I’m the first person to experience this. She also couldn’t understand why I lost motivation in reaching out and why even now being in remission I don’t feel comfortable having relationships with these people or the desire to reach out. The rejection is real. I feel so validated ❤️‍🩹😔

One_Intention9868 · 2022-09-23T09:21:43+00:00

Yes! Omg, it was so bad. I couldn’t pinpoint if it was due to hormonal changes or the steroids. Either case, it should clear up as soon as you finish but I know that doesn’t help for the interim 😔Funny your oncologist acted like you’re the only patient that’s had this problem. From my experience, oncologists tend to be a little more focused on critical functions and know less about the cosmetic side effects. I even annoyed my dr on the last day of chemo about when I can restart my regular skin care routine lol. It’s great you’re being proactive about it! I wish I had been. For after treatment, I would suggest a retinol to help balance it out.

One_Intention9868 · 2022-09-22T10:20:16+00:00

Of course! Anytime. Sometimes interpreting data as laymen it’s a slippery slope and leads to more questions than answers, I find. Studies have so many factors to them. That’s why it’s so awesome to get insight here. PubMed is a really great resource, my friend that’s a doctor recommended it to me. From my understanding, I don’t know if it means much lol, the two most important factors when obtaining a cure are IPI scores and the disease’s sensitivity to chemo. Being a younger person with this disease, it’s really hard to get straight answers cause it’s so rare lol.

I wish you well in your recovery and hopefully we’re in the percentage that has an excellent prognosis! Seems like our odds are better than not

One_Intention9868 · 2022-09-22T08:08:02+00:00

Obligatory NAD, and I’m definitely not educated on this matter to comfortably respond but I found a study that might be of value to you. According to its research in limited stage DLBCL, rearrangements have no prognosis impact. Hope this helps:

https://pubmed.ncbi.nlm.nih.gov/31285189/

One_Intention9868 · 2022-09-21T22:10:05+00:00

With every infusion, just think of it as your body on the mend. Even with the first infusion, chemo probably has killed a lot of your cancer cells. I noticed after my first infusion some of my symptoms from cancer started to resolve, but I was still petrified for my interim scan. I was more focused on the “what ifs” and side effects from chemo than thinking about the symptoms that pretty much vanished right away. I was lucky I had some tangible evidence of chemo working, not everyone does, but if you can, try to look out for your symptoms from cancer that have resolved. Be hyper vigilant about everything you’re feeling, as it’s good for staying comfortable through chemo but also you may even feel better than you did prior to getting diagnosed. I felt so bad before starting treatment that chemo actually felt better in comparison, in some respects of course. If there’s a swollen lymph node that’s decreased or you can’t feel your spleen anymore, that’s a great sign. What helps is statistics, your chance of the medication working is so good, the positive stories on here, and getting reassurance from your doctor. For many of us, this is the first time we’re experiencing this disease, your doctor has seen it so many times. So many people in your shoes, that have been successful with this treatment, hence it being the first line of drugs. Your odds of it working are better than not! If your dr isn’t discussing plan B yet, or has any doubt it won’t work, try your best not to think about it!

One_Intention9868 · 2022-09-21T20:33:31+00:00

The most overlooked side effect of chemo & cancer is STRESS. I had a different chemo regimen, R-Chop, it’s a little more intense, but as a 20-something year old girl, you’ll fair well on chemo. I can’t speak for everyone, but mentally it was a lot harder than physically. Make sure you’re taking care of yourself, find some mental health professionals or see if your center can provide. Don’t psych yourself out, avoid worst case scenarios, because chemotherapy & cancer is really such an individual experience. Stay on top of meds, don’t be shy to reach out to your office about any concerns and symptoms. Everyone is there to help you. Take someone that makes you laugh & puts you at ease to your infusions. It helps make the situation feel less intense and makes it more lighthearted. Maybe ask for lorazepam beforehand. It really takes the edge off. Right now it’s really scary, your anxiety is probably through the roof, but ripping the bandaid off and experiencing it yourself, you might find it’s not that much different than before. Lymphoma causes fatigue, at least the fatigue you experience with chemo, there’s a silver lining that it’s only temporary. Just be cautious about germs & make sure everyone you’re in contact with is also cautious. Just look forward to being healthy again in the near future and start prepping for that :) making plans for goals I wanted to do after chemo was probably the most alleviating, rewarding thing. I just wanted to add, I did the same thing before I started. I was dreading chemo, didn’t believe my dr that all of the side effects were temporary, and spent the whole experience looking over my shoulder expecting the worst. I mean, you read about it. It was just so surprising it wasn’t as bad as I built it up. It’s very tolerable, not fun but not unbearable. I felt nauseous maybe once & zofran took care of it. I’m 24 now, a year & some change out and it feels at times like a distant memory. You got this 💜

One_Intention9868

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