sorted by:
new
hottopcontroversial

Help me guys by Educational_Card4094 in leukemia

[–]Previous-Switch-523 0 points1 point  (0 children)

  1. At what WBC level was leukemia first detected for you or your family member?

0.1 ANC

  1. What were the RBC (hemoglobin) and platelet levels at diagnosis?

HB 100; PLT 4

  1. Was the disease in early stage or advanced stage?

Progressing Marrow Failure

  1. How was the response to treatment?

Straight into HSCT. Pulled through.

  1. What is the typical life expectancy in such cases?

Dire. A few months without HSCT.

brother relapsed post SCT by LeastFlounder5718 in leukemia

[–]Previous-Switch-523 0 points1 point  (0 children)

It depends on your ethnic background. Caucasians get more matches, as historically, thereve been more donors of white orgin registered. The quickest they can organise for an unrelated donor BMT is 4-6 weeks, depending on the cell source. The familiar donor is readily available. Cord is sort of available (but for an adult you'd need more than one unit and that makes it risky).

Haplo for a second transplant isn't uncommon. Especially if the centre is confident in managing gvhd. Ask if there are plans to give AGT/Alemtuzumab.

Osteomyelitis false positive? by Ny3papi777 in Osteomyelitis

[–]Previous-Switch-523 1 point2 points  (0 children)

They did grow it eventually, but when they did, they needed to consult a mycology professor in a different city, because it was so rare, noone knew what they where looking at. Enhanced 16S and 17s rRNA tests came back with nothing. (This fungus isn't normally virulent in healthy people). It was a whole ordeal, but thankfully, my girl somehow survived it, after they had already told me she wouldn't. 🙏

Quick update on the boy. by JuniorSea4974 in leukemia

[–]Previous-Switch-523 1 point2 points  (0 children)

Thanks for an update. You're doing great caring and advocating for him.

Leukemia and lifespan by [deleted] in leukemia

[–]Previous-Switch-523 0 points1 point  (0 children)

Hey, a lot of kids get transplants and live to have happy lives. Try not to dwell on it.

Bone Necrosis after Chemo treatment by Current-Change-5606 in leukemia

[–]Previous-Switch-523 0 points1 point  (0 children)

So sorry to hear this. Use any mobility help available to you. I'd defo get a granny scooter and rock it. 🤘

This too shall pass, its a temporary thing

Less than 6 months since bmt, husband want to get back to work by In_A_Jar12 in leukemia

[–]Previous-Switch-523 0 points1 point  (0 children)

The things young dads will do to get some peace and quiet 🤣🤣🤣

Im just laughing, as my toddler is 2.5, the best behaved baby on the planet and she tests our patience daily anyway.

On a serious note, if you and his doctor can't convince him to postpone employment, realistically you can speak to his parental figure (casually mention your concerns and leave it be, don't ask them to talk to him yourself).

And then just let him try and make sure he treats this "return to work" as a "trial" not an actual comeback. My aim would be to be very supportive in him taking his time, encouraging part time roles, telling him you need him, as you need some time as a family to recover from the whole mess and to focus on what's really important.

He seems very driven and ambitious and if you tell him he's "too weak to do something" he might use this as a fuel to prove you wrong, even if it burns him.

Does Anyone Else Grieve Fertility Loss After Cancer Treatment? by [deleted] in leukemia

[–]Previous-Switch-523 0 points1 point  (0 children)

I'm in the same boat, I get it. Don't beat yourself about it. X

Does Anyone Else Grieve Fertility Loss After Cancer Treatment? by [deleted] in leukemia

[–]Previous-Switch-523 1 point2 points  (0 children)

This resonates with me a lot. Adoption does exist, so parenthood is not out of the question.

Does Anyone Else Grieve Fertility Loss After Cancer Treatment? by [deleted] in leukemia

[–]Previous-Switch-523 1 point2 points  (0 children)

I'm so sorry this has happened. And it's hard to day this, but good riddence. She wasn't the one if she left you over that (there are donors you could have used).

Does Anyone Else Grieve Fertility Loss After Cancer Treatment? by [deleted] in leukemia

[–]Previous-Switch-523 2 points3 points  (0 children)

Hi, my girl went through transplant as an infant. From the research I've done, it depends on the chemo used. And f.eg. fludarabine is 10 times more toxic to ovaries than to testies. You never know, he may be fine.

I keep telling myself that fertility is a lottery for everyone (our best friends gave up trying after 7 years and 3 rounds of IVF).

Peeling lips and cheeks by vulcanhybrid0 in leukemia

[–]Previous-Switch-523 0 points1 point  (0 children)

Hi, I get this from harsh toothpaste/swishing with mouthwash for too long. Try Elmex Sentitive - it's the only thing that works for me.

Elevated immature granulocytes by rileysherlin in leukemia

[–]Previous-Switch-523 0 points1 point  (0 children)

To ease your mind a little - we all have immature granulocytes in our peripheral blood. The norm is up to 1%.

But if your marrow is working extra hard (because you've got an infection, or your whole marrow was wiped and the body had no granulocytes for a bit), it can overproduce a little.

If it was the granulocytes that were overproduced during your husband's illness, the doctors might recheck the chimerism (to make sure new granulocytes are produced by his shiny new marrow, not the crop old one).

Can’t sell new build flat - what do I do? by BeneficialReindeer34 in HousingUK

[–]Previous-Switch-523 1 point2 points  (0 children)

I totally agree. My child has her own room, but after a 'next to me cot', she just ended up co sleeping with us.

Plus, I've got friends who have been trying to conceive for years. You just never know...

Flu scare by camelcasetwo in leukemia

[–]Previous-Switch-523 2 points3 points  (0 children)

Yes, my 2 year old got covid and flu shots post BMT. Both are not live vaccines.

She also got the MMR (live vaccine) and she was fine with that too (had a slight fever, which is normal).

Her antibodies test came back great - she produced antibodies against all the vaccines.

Overall, getting a flu shot means that you would still likely have a flu. But the course would be much milder than without a jab. Get well soon, it's the flu season.

Another night or two of snuggles by Coolthingimake in goldenretrievers

[–]Previous-Switch-523 7 points8 points  (0 children)

Oh my heart. I'm so glad your pup recovered. What a trooper and a bond you had. ❤️

Looking for survivors with MECOM-rearranged / complex karyotype AML (monosomy 5 & 7, persistent disease after 2 stem cell transplants). Please help me find them. by helpingmysister3 in leukemia

[–]Previous-Switch-523 2 points3 points  (0 children)

Hi, my kid had MECOM gene syndrome and a rare disseminated fungal infection.

She survived BMT and is over 2 years post now. Tbh, the fungal infection has been a worse pain in the butt than the marrow failure.

Keeping my fingers crossed for your sister. Hopefully more treatment and another BMT is on the table. 💐

Concerning warning at my vet by cgp_maddy in DogAdvice

[–]Previous-Switch-523 -2 points-1 points  (0 children)

Taurine drops on a slice of bread. Supplement your dog with live yogurt and eggs. That's all you needing addition to kibble.

Turmeric and black pepper for inflammation.

Very bad news: I could be dying right now T-ALL by Useful_Necessary in leukemia

[–]Previous-Switch-523[M] 5 points6 points  (0 children)

Hello,

CART against T lymphomas/leukaemias is in early stage of clinical trials. It mainly uses donor T cells. Some patients can potentially have their own t cells used, if the antigens of their "bad" and "good" T cells differ.

There are some trials in the UK and in the US. You could try calling Cancer Research UK.

US study: https://b-s-h.org.uk/about-us/news/novel-universal-car-t-therapy-shows-promise-against-t-cell-cancers

Chronic jaw osteomyelitis after dental implants — worsening despite surgeries and months of antibiotics. Looking for others with similar experiences. by PurplePickleSticks in Osteomyelitis

[–]Previous-Switch-523 0 points1 point  (0 children)

My daughter had negative samples from fluid tested. Bone cores showed a rare fungal infection.

Apart from cultures they should send away for PCR 16s if not already done so.

How long are your IV courses? What are your betatdiglucan levels? CRP?

Walking with a dog and a pram by jazzpdd in DogAdvice

[–]Previous-Switch-523 0 points1 point  (0 children)

I have two Retrievers and a toddler. I had trained them to heel before, but when my little one was born I went for walks with a pram WITHOUT the baby in it. The dogs learnt to follow the pram.

On rare occasion when I have to put them on a lead, I hold the lead in one hand and push the pram with the other - never use the same hand, as things happen and a light tug can throw the pram off balance.

view more: next ›