Phone appointment

[Mostew]

Just had the usual after blood test phone appointment . Not spoken to him before and hope to again.

He suggested increasing Hydroxy by one tablet every 2 weeks ,it works out at 3 one week 4 another at present… we talked about the different studies some saying ideal under 450 other 600. He admitted no way of knowing which is right….

He assured me that dose wasn’t toxic. Of course I disagreed asking if it wasn’t why can’t I share towels etc!!!!!

After a while he agreed that slow and steady was fine and another blood test in 6 weeks .

Put the phone down feeling he really listened therefore I could respect his views which I’m so pleased to be able to report.

Carolyn

[piggie50]

What do you mean, share towels?Thanks

[Mostew in reply to piggie50]

I've been told and read it's best to use separate towels to others when taking hydroxicarbamide

[Rem31 in reply to Mostew]

Not heard of that before now but could it be in case the patient’s skin could be more sensitive and at risk from sharing?

[Mostew in reply to Rem31]

I can't find info now . It was on the sheets I was given when prescribed.

Assumed bodily fluids ,risk to others ?

[hunter5582 in reply to Mostew]

You are mostly likely correct that it is about avoiding exposing others to HU. HU does pass into various bodily fluids. I would expect that the level of exposure is so low with what would be passed onto a towel that it is a warning that is perhaps a bit of an excess of caution.

You are, of course, correct that HU is a toxin. Specifically it is a cytotoxin that interferes with DNA activity.

This is the HU Warning

"Highly toxic drug with a low therapeutic index. Administer only under supervision of qualified clinicians experienced in use of cytotoxic therapy. Hydroxyurea is genotoxic and is a presumed human carcinogen; also, mutagenic and clastogenic in vitro. Secondary leukemias have been reported in patients receiving long-term therapy for myeloproliferative disorders (e.g., polycythemia vera, thrombocythemia). Carefully consider risks of developing secondary malignancies against the benefits of therapy."

drugs.com/monograph/hydroxy...

Highly toxic drug with a low therapeutic index. = The ratio between a therapeutic dose and a seriously harmful/lethal dose is relatively narrow. This requires close monitoring and dose titration.

fda.gov/industry/generic-dr....

Your doctor is also correct with a different definition of "toxic." At the vey low dose you are taking you are unlikely to experience significant adverse effects. Having said that, I did experience minor toxicity at a very low dose. We are each different in how we respond to HU. Others tolerate much higher doses just fine.

Hope that answers your question.

[Mostew in reply to hunter5582]

Yes thanks ,well explained as usual....

That's what I thought risk low . I'm not fanatical about separate towels but a bit more so than previously..

[piggie50 in reply to Mostew]

I’ve never heard that. I’ve been on Hydroxicarbamide for 9 years.

[Mostew in reply to piggie50]

As no 9ne else has heard of it I'm wondering if I made it up!!!!! If anyone has appointment please can you ask ?

Thanks

[Solyesh in reply to Mostew]

I did not specifically hear of the "towel thing" but my MPN specialist did warn at that HU could be toxic for others and for example recommended using a prophylactic for intimacy.

[EPguy]

A conversation of equals, it's hard to have that at any level with so many Drs. You have a good one.

The pills can be both toxic and useful, I agree it's hard to figure that conflict. It's also hard to get over that label. I called them "poison pills" but it's actually among the least poisonous of chemotherapy, but only for those who can tolerate it.

A study I posted long ago on "Long Term INF" also found HU gave long term event and survival benefits.

Your dose is still low so Dr's point on toxic makes sense.

[Mostew in reply to EPguy]

Thank you. Good to hear your thoughts .I'll look up that report.

[Mostew in reply to Mostew]

Yes . I put phone down smiling

[mhos61]

I must say I have never heard of the ‘towel thing.’

[Jelbea]

Hello Mostew - I have heard of the “towel thing”. I was also advised that if I could use a toilet separate to others I should do so. There are also instructions to double flush the toilet with the lid down. I actually think some of this info is in the printout with my HU and I will check on this.

[Mostew in reply to Jelbea]

Just noticed above . I hadn't heard about toilet .

[Wyebird]

I was never told not to share towels

[Mostew in reply to Wyebird]

It was just in the original 2 or 3. Page info given with original prescription

[Janis12]

Good god, I was never informed of this (towels toilets) other than 'do not touch the capsule'. It does not surprise me though, please read my recent post Re Hydroxy and the cat, I guess it confirms what you are saying about the toxicity. I hope it's okay to breath the same air otherwise we are all stuffed. Good luck.

[piggie50 in reply to Janis12]

This made me laugh. 😂 I’ve touched the capsules for the last 9 years with no ill effects, share hand towels and kiss my grandchildren.Let’s all be sensible here. 🌸

[Mostew in reply to piggie50]

We probably all are being by the sound of the chat . I was curious to see if others had heard of towel thing. Always good to smile

Carolyn

[Mostew in reply to piggie50]

Think I meant sensible not sound ... .

[Otterfield]

I think the towel thing must have been added long after I went on Hydroxycarbamide in 2003. I was always careful with medication but didn't do anything special for HU. My husband used the same towel in our bathroom for years and he is in great health. Precautions are good though, but I think we should just apply common sense and not worry about it. I would love to still have ET and just be on HU!

[Mostew]

Oh Jennie , those last words will remind a lot of us to appreciate what we have .Do hope you are. Doing ok

Carolyn x

[Otterfield in reply to Mostew]

Thank you. I feel okay but in limbo waiting to go back in when my donor has completely got over her Covid.