Purpura on w&w?

[Vlaminck]

Since diagnosis 3 years ago, while on W&W, I have had presume purpura spots come and go on my left arm, but today, after reaching in to tomato cages to capture the best and presumably scraping my arm, I have developed a whole big area of what I assume to be purpura, spread over about 3 inches and not more than 1/2 wide, and one area even raised some. Looks super ugly. I haven't had blood work since April at which time my platelets had fallen to 160, but doc wasn't concerned. I would love to hear from others if there are others who had had repeated purpura while on W&W, or should I be ready in Oct (next review) to find my platelets too low? Take lot of supplements including fish oil many days but have never had anything like this before. Would love to hear from others. Thanks, folks.

[AussieNeil Administrator]

Per our earlier discussion, healthunlocked.com/cllsuppo... unless your have medical advice to take fish oil supplements, stop taking them and see whether your increased tendency to bruise ends. I'd also recommend arranging a CBC/CBE blood test to see if your platelets have significantly fallen. It's possible that your platelets could have fallen below the threshold for starting treatment, but perhaps it's the fish oil or other supplements or drugs with anti-coagulation properties that are causing this.

Neil

[Edalv in reply to AussieNeil]

I agree, also I would add turmeric to the list of supplements to avoid if your platelets are low…

[ClemMends in reply to Edalv]

Intrigued. I'm 7 years on WaW with my figures gradually declining. The one that worried me most was platelets, being down to 110 last November. Having done a bit of casual research, I thought turmeric tabs looked interesting albeit a bit cranky, so started on them as what'sto lose. My next 6 monthly check had platelets at 145. Could be entirely coincidental but why would I stop?

[Vlaminck in reply to ClemMends]

Interesting. And congrats on higher platelets.

[Edalv in reply to ClemMends]

We are all different I guess, in my particular case, I need to watch my turmeric intake. I get nosebleed when I take too much turmeric in supplement forms. I don’t have the same problem when I use it in condiment form with food…

[Vlaminck in reply to Edalv]

I hadn't looked into it after your post, but given the back and forth, just googled and found this from NIH: seems to say it increases platelet count! pubmed.ncbi.nlm.nih.gov/365...

[AussieNeil Administrator in reply to Vlaminck]

Edalv 's experience makes perfect sense given these statements, with my emphasis in the study you found,

"Curcumin has also been proven to prevent atherosclerosis and platelet aggregation, as well as to reduce angiogenesis in adipose tissue. In the cerebral microcirculation, curcumin significantly lowered platelet and leukocyte adhesion. It largely modulated the endothelium to reduce platelet adhesion.

:

Through regulating many processes involved in platelet aggregation, curcuminoids collectively demonstrated detectable antiplatelet activity. Curcuminoids may therefore be able to prevent disorders linked to platelet activation as possible therapeutic agents."

So with curcumin, there's a valid concern that it could reduce clotting, so that you are more likely to have bleeds which would increase your propensity to bruise easily. Uncontrollable bleeds can prove fatal and if they are internal, they can remain undetectable.

Neil

[Vlaminck in reply to AussieNeil]

The article says, right at start, that curcumin improves platelet count." In fact, from the article and other readings, I am coming to understand, I think, that platelet ACTIVATION and platelet AGGREGATION are not positives for platelet counts so not something we necessarily want but something that reduces count by clumping them together perhaps. ??? To me the article gives the impression that it improves platelet function overall. And if so, then would seem this would be good, in terms of clotting, etc-- right?

Here is first paragraph from that article:

"The rhizomatous plant turmeric, which is frequently used as a spice and coloring ingredient, yields curcumin, a bioactive compound. Curcumin inhibits platelet activation and aggregation and improves platelet count. Platelets dysfunction results in several disorders, including inflammation, atherothrombosis, and thromboembolism. Several studies have proved the beneficial role of curcumin on platelets and hence proved it is an important candidate for the treatment of the aforementioned diseases."

[Vlaminck in reply to Vlaminck]

In line with what I wrote above, came across this discussion of activated platelets: "A lot of effort goes into minimizing platelet activation to improve efficacy for hematology/oncology patients, she said. For actively bleeding trauma and surgery patients, activated platelets are potentially preferable because they’re hemostatically more active." This comment is from: captodayonline.com/activate... Conclusion I draw-- we don't want things that activate when not needed, and curcumin helps prevent this and thereby raises count. (I am not trying to push curcumin here, just reading what I'm finding)

[AussieNeil Administrator in reply to Vlaminck]

There are several different aspects relating to platelets you have raised;

1) Addressing low platelet production which is due to (in our case and as mentioned in the captoday article), reduced bone marrow production (due to a combination of the impact of the blood cancer bone marrow infiltration and that of blood cancer treatment drugs on the bone marrow).

2) Reducing the risk of life threatening bleeds by ensuring that even with a low platelet count, that what platelets we have, will properly aggregate where there is a break in a blood vessel wall and block the bleed.

3) The opposite of (2), that is preventing premature platelet aggregation, which puts patients at risk of clots in the brain (stroke), heart ('heart attacks'), lungs and other organs

4) A measure of (2) and (3) in assessing the lifetime of platelet transfusions, with longer times between transfusions being achieved by reducing the loss of transfused platelets through aggregation - and possibly clotting (initiated by activated platelets). With platelets in circulation not being lost due to aggregation, the platelet count can climb when bone marrow production and supplementation by transfusion, exceeds the loss due to aggregation.

Clotting is a very complex process, influenced by many different factors which you can begin to appreciate from the above. Taking turmeric might help some of us and be dangerous for others of us to take, based on our individual circumstances - platelet count, treatment status, risk of cardiovascular events due to us having heart fibrillation and so on.

Neil

[Vlaminck in reply to AussieNeil]

Yes, true.

[AussieNeil Administrator]

You have me puzzled, because all of your past posts have replies, with your related post of 2 years ago Purpura during W&W?

healthunlocked.com/cllsuppo... having 15 replies. The very important reply from Dr Brian Koffman is still relevant, "Recheck platelets. They can crash from ITP in CLL." which you acknowledged, though as he subsequently replied "The doctor in me always thinks of the worst first to rule out."

Neil

[Vlaminck in reply to AussieNeil]

Well, sorry to confuse -- I searched for "purpura" on the site and the only post that came up about it other than a couple on coincidence with vaccines--was mine and I looked down to see if any replies (didn't recall) and saw what I thought was 0 replies. Don't know what I looked at, maybe the wrong place. Thank you for pointing it out and setting me straight back to my old post!

[country76]

I have been in treatment for 4 1/2 years and just found out that this perpetual bruise on my left hand is actually stained skin from the iron in my blood. I had bruised the same spot several times. I was recommended to use a lightening cream which I haven't looked for yet.

My other bruises have disapated. This is the only one that turned into something else. Maybe the top of my hand the skin is thinner and the repeated brusing from accidently hitting something or tucking the sheet corners in on my chest bed.

My blood work is normal.

[Vlaminck in reply to country76]

Thanks, Country 76, never heard of skin staining before. Glad bloodwork is normal.

[SeymourB]

Vlaminck -

Assuming platelets appear normal, have a look into Solar Purpura:

verywellhealth.com/solar-pu...

I've had this for a decade or so even in Watch & Wait. I'm fair skinned, age 68.

For me, they are painless and gradually turn brownish.if scratched, they bleed. I use CeraVe lotion.

=seymour=

[Vlaminck in reply to SeymourB]

Thank you, Seymour, for that info. Not heard of it before separate from regular purpura, but yes, skin thinning plus I'm super fair. And old. Only had a few teen years as a sun worshiper. Not really worried except what it might mean in terms of platelet count.