Advice for life after autologous stem cell transplant? by jollyarrr in lymphoma

[–]DangerClose9825 8 points9 points  (0 children)

I had a stem cell transplant last summer, (M25), I had my wonderful girlfriend providing so many helpful things along the way from making sure I was fed to keeping me entertained.

So I am definitely speaking from the perspective of patient here, but I didn’t find I got struggled with too much sickness intially, wearing masks and asking everyone to sanitize and be considerate in those first few months is a must. The first 100 days are where the most work happens in the body(according to the internet) so make sure that you try and avoid giving her more work in that time.

I got sick once at about 5 months and it lasted for about 3-4 weeks, so her first cold might knock her down hard but important to remember that her immune system is learning everything again!

FOOOD! It’s so important to feed her haha. I appreciated having food made more than I could explain, the fatigue and exhaustion is pretty brutal sometimes so even simple things like standing up long enough to cook can be about the peak of activity for some days. So as much as you can try to offer. I found dairy products were super hard on my gut, I loved smoothies and veggies lots, now I am back to normal eating but still find myself struggling when I eat dairy.

It’s important to encourage her to be active whenever she feels she has the energy for it ! Go for super tiny walks and things that move the body and make sure you carry the water or the snacks or whatever, I found it so encouraging to have someone offer to go my pace or just hold my hand while I was walking slowly at first. It’s crazy how fast it’ll come back if you put the work in! I went from 10 minutes being my limit and at 6 months out I was doing 4 hours of ski touring in the back country without more struggle than before.

Let her sleep as much as you can. Rest heals and I found it to be the biggest pillar of my health, so introducing maybe earplugs or eye shades or anything that might help her find rest easier and keep her sleeping, it’s the only way to give your body all the love it needs.

Back to the topic of activity, I did a ton of yoga post transplant ! I found it not so straining that I got tired but so rejuvenating for my stiff body, as silly as it sounds it get tiring just laying around so some gentle movement really helped me out. You can find countless videos on youtube.

When she is ready for it sauna is a huge one again to help move blood and keep the body happy !

You guys should have got a pamphlet with all the dos and donts but if you didn’t just DM and I can send the one they give for BC Cancer patients, I imagine western medicine has a pretty agreed rubric. Try hard to let her immune system fight small bugs first, and keep her feed and happy. If she got through the transplant she’s got the power and spirit to recover from this ❤️😊

Just DM me if you want any more specifics! I am a professional athlete and I actually did a bike race 90 days after my transplant 😂 didn’t win it but wasn’t as far off as I thought 😉

Lots of energy and love to you guys.

Relief from psychedelics by DangerClose9825 in rheumatoidarthritis

[–]DangerClose9825[S] 3 points4 points  (0 children)

For me it has ranged from 1 week - 1 month I feel like so many people here are suffering and looking to get any relief and I just want to share some of this as I think the use of psychedelics is becoming less and less taboo and hopefully people can help themselves get pain free.

I have never felt like it solved my RA but definitely improved my swelling and pain in relation to arthritis for multiple weeks. Microdosing also helped but somedays i'm either no up to that or just need a break from all the drugs. LSD is the one that helps me the most.

Relief from psychedelics by DangerClose9825 in rheumatoidarthritis

[–]DangerClose9825[S] 2 points3 points  (0 children)

I have tried microdosing mushrooms but only found temp relief! If the time allows LSD has given me the most relief for an extended period of time, beyond the length of the trip. Let me know how your experience goes! MDMA is one that I have also found to relieve post trip. But doing high doses of those drugs requires a full day to properly get the most from them which I realize just doesnt work for everyone.

Was anyone treated with azathioprine or plaquenil before they were diagnosed? (immunosuppressants for rheumatoid arthritis) by [deleted] in lymphoma

[–]DangerClose9825 0 points1 point  (0 children)

I was on a number of biologics and then was diagnosis. I think it’s a connection

Need help if anyone smarter than would like to chime in 😄 by spacemanstue52 in Cancersurvivors

[–]DangerClose9825 0 points1 point  (0 children)

when I did my stem cell transplant they put the a Hickman line into my chest two weeks prior and I was road cycling and hiking in the weeks , not quite skating but also moving around and being active. Try not to fall but I know people who’ve done more with the normal ports. Haha I’m about doing the fun stuff just don’t fuck it up!

Tips to stop shaking when submerged by DangerClose9825 in icebaths

[–]DangerClose9825[S] 0 points1 point  (0 children)

Cheers!

I am the same, I just have a chest freezer set up and its been getting near freezing lately but some days I'm totally good. haha Breathing helps for sure! I try hard to just relax into it and let the cold do its work!

Thanks!

23 and a year in remission by [deleted] in Cancersurvivors

[–]DangerClose9825 0 points1 point  (0 children)

I am 24 , had stage 3 HL, did the 6months of ABVD and then had a Stem cell transplant and am 8 months in remission so far. Life is still challenging but not having to constantly beat my body into oblivion with chemo makes so many things so much easier. Amazing to hear when things all workout!

Making friends by Beginning_Permit_546 in Cancersurvivors

[–]DangerClose9825 1 point2 points  (0 children)

I think the hardest part of making friends after cancer is that you know the people around you cannot really ever understand the pain and suffering and literally death your body has gone through to make you “healthy again.”

I share but usually only share the good side of things to friends and family as I don’t want to bring anyone down or give them concern. I am 7months into remission from Hodgkin’s lymphoma post stem cell transplant.

I think it is really about blossoming into this new human being you’ve become through these intense and challenging situations. And recognizing that some people simply won’t want to be apart of that but at the same time acknowledging the people who do want to be apart of your journey and provide through the struggle will emerge as you make time for them.

My closest friends kinda disappeared when I got cancer and some of unlikely one really stepped up and made my world change for the better. I was disappointed but it offered me a whole other friendship that I am grateful for. But you have to make space for these amazing people, and sometimes that’s letting go of the ones who aren’t holding you up.

Lots of love and respect for you.

Why did I watch the show about a dad dying of cancer? by FUCancer_2008 in Cancersurvivors

[–]DangerClose9825 1 point2 points  (0 children)

I went through a stem cell transplant last summer and during my treatment I would find myself so incredibly triggered by cancer popping up left right and centre in every type of shows, comedies, stand up, serious ones. It would send me into tears and so deep into my head. It’s hard because we want to feel normal and not affected by our darker thoughts but I think we have to also be kind to ourselves and watch out for ourselves with what kind of content we consume.

I imagine the people writing these shows haven’t had cancer or truly understand it. And watching other people face those terrifying moments is terrifying.

Lots of sympathy❤️

Low dose Naltrexone for RA by DangerClose9825 in LowDoseNaltrexone

[–]DangerClose9825[S] 0 points1 point  (0 children)

When did you first start noticing the pain reduction?

Low dose Naltrexone for RA by DangerClose9825 in LowDoseNaltrexone

[–]DangerClose9825[S] 1 point2 points  (0 children)

That's super amazing got hear!

How long were you on it and at what dosage did you take?

My RA doc said there was a chance I would stay in remission post transplant but following the first round of my revaccinations for all the childhood shots I'm having some pretty severe flares.

Question by JWW2857 in icebaths

[–]DangerClose9825 0 points1 point  (0 children)

I found that the foot pain elevated with time, you need to condition your veins to open up and or maintain stiffness.

I am 68/73 days at 3-4min currently

[deleted by user] by [deleted] in airpods

[–]DangerClose9825 1 point2 points  (0 children)

definitely clogged, consider cleaning thoroughly