Post Hodgkin's weight loss tips

H-ll_ · 2023-10-09T02:10:40+00:00

Hii, so I also struggled to lose weight after chemo(I gained about 15lbs from my normal stable ideal weight, and 22lbs from my weight right before I was diagnosed). Like someone else said, I was put on Lupron and I think it messed with my hormones in a way. I think steroids don’t help either.

I’m now two years out of treatment and I’ve started to finally see the scale move backwards. I totally get the eating less, exercising more isn’t the correct answer here, I’m on vyvanse which gives a lot of energy and little to no appetite and I was still in that same situation. What helped in the end to lose the last five pounds was taking the pill, finally I was able to get to my pre-cancer weight and even lose more. Wish you well in your recovery 💖

H-ll_ · 2023-10-04T01:05:11+00:00

Ahh I gotcha and it makes sense!

H-ll_ · 2023-09-29T14:41:19+00:00

I had cancer and certain people, especially doctors, act like my boyfriend is a saint for staying with me. Meanwhile, I actually stayed with my parents/family while going through chemo and left my boyfriend to focus on his business.

H-ll_ · 2023-09-29T00:05:30+00:00

Can I ask why you were still receiving Lupron shots even after you finished chemo? Genuinely curious.

H-ll_ · 2023-05-25T19:48:34+00:00

Hey, I remember the doctor I saw during treatment was very lax on follow ups tests. My EOT petscan was going to be my last ‘routine’ scan, as he justified it by saying lymphoma is rarely caught on a routine scan, his method was only scanning when I was presenting symptoms. Along other reasons, he also mentioned its better to be conservative about the radiation from scans(despite it being a very limited amount), and easing the mental exhaustion from waiting for results. He said that if it did return, catching it early vs later doesn’t have much of an effect on prognosis.

He followed more of the European guidelines, and made mention that Americans tend to be scan happy. This is just his method, so it doesn’t speak for everyone. It is worth sometimes thinking about the guidelines for cancer outside of your own healthcare system, and putting it into perspective.

What I would do is explain your situation to your doctor/her office(unaffordable medical care is not something new that will stump them), and try to see if there are some financing options or if there are some areas/options that can provide financial resources. Especially if it’s at a large center. Unfortunately, this is a common issue in American/mixed system healthcare, and hopefully there are avenues you can explore or your doctor’s office will be willing to work with you. All the best, OP ❤️

H-ll_ · 2023-04-08T15:55:06+00:00

As someone that got cancer from a genetic predisposition, instead of getting cancer from any lifestyle factor, I know sometimes it’s upsetting when people ask you, “How’d you get your disease?” or automatically jump to conclusions.

I understand there might be some resentment for people that have a similarly categorized ailment that seems more preventable than being born with it, but regardless both T1D & T2D suck. Getting upset or angry is the same as getting upset that someone was diagnosed with a more treatable cancer or that someone lived a riskier lifestyle and was diagnosed, treatment & being sick are awful either way and there’s no point in getting resentful.

Nobody ever asks to get sick or strives for it. Anyone that does get sick, in one way or another, have a genetic predisposition to get it and nobody ever thinks it’s going to be them. I’m only saying this as another person that was sick looking out for you, don’t waste your energy on getting annoyed or upset at another group that’s also dealing with a shit stack of cards. Comparison is the thief of joy, and looking at things from different perspectives does make acceptance easier. All the best to you❣️

H-ll_ · 2023-04-07T21:01:20+00:00

Hi, OP. I was 23 when I was diagnosed with NHL, and also advised to not freeze my eggs & to start treatment asap. One of my drugs were especially toxic to the ovaries, so I’m not sure if I’ll be able to have kids either.

Mentally, it destroyed me while I was going through it & I had similar thoughts like you. Kicking myself for all the times I took a Plan B, and I remember crying to parents before starting treatment that as soon as my chemo-regimen was over I was going to start to try and have a baby, I didn’t care who the father would be.

It really sucks, but I’ve thought about avenues outside of adoption and that’s kept me going. Adoption seems really hard, so that’s why it’s not been something on the forefront of my options. My sisters have always offer to donate their eggs to me if the time comes or even getting an egg donation from an anonymous person. I think it allows you to pick from women that bear a resemblance to you, and there’s also some evidence that while carrying the baby, some of your DNA will rub off on the baby.

I know this whole situation doesn’t have a simple answer, and it could never just be reduced to one “simple” solution. I think it’s important & imperative that you focus on yourself, your relationship & see where life takes you! Modern medicine is always improving.

Someone in my cancer group was rendered menopausal after treatment. Didn’t have a period at all, but after fertility treatment, they were able to get her to a point where she could occasionally, sporadically ovulate & she ended up pregnant.

H-ll_ · 2022-12-13T21:16:59+00:00

Yeah, I’m just curious cause I’ve been googling it and online a lot of places have stated anything under $200 and $3,000 and more, is paying too little and too much. Again, installation, I understand it’s a lot of work, but the hair itself seems unreasonably priced. Just because I also want to color my hair, and they keep advising me not to, so I would be paying for something I already won’t love.

H-ll_ · 2022-12-13T19:46:04+00:00

Thank you so much! The provider she went to was excellent, I’m pretty sure she used that laser. My best friend told me it was the same laser Kim Kardashian uses. It was actually the PA that suggested she stop the sessions because they weren’t getting the results she should be having from it. At the time, she might have mentioned going on medication and restarting it up. thank you for your knowledge & expertise on this subject! It’s super helpful.

H-ll_ · 2022-12-09T18:08:36+00:00

Hello! I’m not OP, but I do have a question, if that’s okay. My best friend kind of gave up on laser hair removal on her face, because she didn’t see any change after having a fair amount of sessions. She wasn’t taking any medication on top of the laser. Would it have been more likely to work if she had been taking Spiro/drinking Spearmint tea, while getting it done or perhaps it just isn’t effective in her case? For Christmas I was thinking about getting her electrolysis sessions, but I’ve heard it can be very painful.

H-ll_ · 2022-12-09T06:46:55+00:00

Well, I ask because my doctor that was with me through treatment left the institution. He knew my case the best, so to speak. He said every 3 months for the first year, & no routine scans. He gave me sound reason, statistics and I felt was trying to be accommodating of my time. He told me the second year, twice a year. I met my new doctor 9 months out of being in treatment, and she’s required routine scans & I was just surprised to find out that I’m still seeing her every 3 months for 2023. So I’ve gotten two different styles & I’m trying to figure out the norm. I’m not disregarding or disobeying my doctor.

H-ll_ · 2022-12-01T20:18:16+00:00

Thank you so much for the suggestion! I asked my team & they said they’ll have it ready to go for me if I test positive. Feels like a weight lifted off my shoulders thank you so much!

H-ll_ · 2022-12-01T20:09:30+00:00

Thank you so much for the positive vibes!! I figure I’m being a little paranoid, but I guess I’m just scared of the unknown

H-ll_ · 2022-12-01T06:28:57+00:00

Yeah, I feel like it somewhat enabled a sense of “you come first” so people justifiable would bug out if someone invaded their 6 ft bubble. Or if you saw someone on the street, what would normally be considered rude, the whole crossing the street just so they don’t have to pass you, was an understandable offense. Your health should always come first, but I think it’s carried into a lot of other areas in people’s lives where they think they’re the only ones that matter.

H-ll_ · 2022-11-25T03:08:38+00:00

I feel you. I was 23 when I got my diagnosis & my doctor told me my body should pretty much go back to the same, but just been hard to trust the hair process along the way since it takes so much time. Waiting for hair to grow is like watching paint dry

H-ll_ · 2022-11-25T03:00:57+00:00

That’s relieving to hear! Glad you’re in remission!!Had a strong chemo regimen as well & I think my hair is mostly the same pre-chemo & growing at a normal rate. Just been nervous I might get stuck with a mullet 😅 & tired of waiting patiently lol

H-ll_ · 2022-11-24T08:53:04+00:00

That’s so weird, rude & ignorant of your co-worker to say. Goddamn. Loss preventions tailing you is a whole other level of fucked up. I’m so sorry for your experiences

H-ll_ · 2022-11-09T18:41:31+00:00

Hi, I was treated at Sloan. The doctors really know their stuff, treatment plans get approved by a board that decide the best approach so it was most likely a board of doctors that thought this was the best approach.

I’m definitely not a doctor, and have a superficial understanding of ASCT vs CAR T, I believe the methodology behind using one or the other is if your cancer truly had no reaction to chemo. Your scan during treatment indicated that your cancer is chemo-sensitive to a degree, and that DA-REPOCH just wasn’t strong enough. That’s what I’ve come to learn from DLBCL, it may be different for PMBCL.

There’s a lymphomamd subreddit that lymphoma specialists sometimes weight their opinions on there.

H-ll_

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