How to find previously posted answers to your questions

[AussieNeil]

With around 4,500 of our community membership of ~18,000 actively participating each month, there's a very high likelihood that members have already provided helpful responses to any questions you might have. While we love hearing from new members, I'm sure our volunteers would prefer to read a reply to a previous post saying how helpful it was, rather than once more providing answers to regularly asked questions .

There are many ways you can find previous relevant posts:

- Site and Community searches

- Pinned Posts

- Topics

- Searching a given member's posts/replies

- Web search using Google, Bing, Yahoo, etc

A search in Newsfeed by typing key words into the "Search HealthUnlocked" field (top right of the page), will return relevant unlocked posts from ALL communities that mention your search terms. To search locked and unlocked posts in one community of which you are already a member, first enter that community by selecting it from the 'My hub' menu item. An explanation of locked, i.e. private to the community and unlocked i.e. internet discoverable posts, is covered in this post: healthunlocked.com/cllsuppo...

We have pinned posts covering topics of most interest in the Pinned Posts section, which you'll find to the right (on a computer) or below (on a mobile device) of any post you open.

You can search a specific topic by opening the topic of interest to you, shown under Pinned Posts.

If you remember who posted/replied about something, you may be able to find what you are looking for by going to the member's profile. If they are a regular poster, you can just find a previous post/reply by that member and select their username/avatar. To find a given member, select the community they belong to from the 'My hub' menu item and select the Members tab. For this community, it's: healthunlocked.com/cllsuppo... Alternatively, if you remember the member's username, you can just enter the member's profile into your browser's address, e.g. healthunlocked . com/user/(username) .

Enter enough characters from a member's username in the 'Search members in CLL Support' field. Select the relevant member's name or avatar image and then select the 'Posts' and 'Replies' tabs to find the item you are after.

The HealthUnlocked site search has improved over the years, but you still might have a better chance of finding previously posted unlocked content using a search engine. If you use Google, you can limit your Google search to our community by including site:healthunlocked.com cllsupport in your search terms. Note that any hidden posts will be harder to find via a search engine, because the poster's name is changed to 'Hidden' and all that can be searched for is words from the title and the first sentence or so.

While the top 30 pinned posts are visible to the right of a viewed post on a computer and below on a smartphone or tablet, all the pinned posts can be seen in this view: healthunlocked.com/cllsuppo...

as described here: healthunlocked.com/cllsuppo...

Don't forget to make your posts easier for others with the same questions to find by using a meaningful title and providing helpful background early in your post. More posting tips can be found here: healthunlocked.com/cllsuppo...

Neil

Photo: New Holland honeyeater (Australia was originally named New Holland!)

Last updated 27-July -2021

[Cllcanada Top Poster CURE Hero]

Yup they need to work on searches...

Great shot Neil... wonderful that he is looking at you... 😄

[gralnick]

Neil hello,,hope you are well safe and happy xoming yearI am dreadful at nacingating this sight

You have helped me a long time ago,,please,,

Do you know if I need to wait for a week or sone after ivg infusiin to have vacine virus shot? Also is the oxford a dead weakens virus or live? Cant seem to get an answer even feom my sort of doctor!

Any help please,,just hope if you read this I can find the answer! Keep safe and well,,think i fo u der the name of gralnick!

[AussieNeil Administrator in reply to gralnick]

That's a good question and while live vaccinations may not work as well with IgG infusions, with CLL, we shouldn't have these vaccinations, so it's not an issue. From: drugs.com/mtm/immune-globul...

What should I avoid while using IGIV?

Ask your doctor before receiving a "live" vaccine while using IGIV. The vaccine may not work as well and may not fully protect you from disease. Live vaccines include measles, mumps, rubella (MMR), rotavirus, typhoid, yellow fever, varicella (chickenpox), zoster (shingles), and nasal flu (influenza) vaccine.

Only two of the coronavirus vaccines in development are live/attenuated, from Turkey and India, so again, not an issue for the currently provided vaccines. See: healthunlocked.com/cllsuppo...

Neil

[Funman]

Will it be safe to take the vaccine for covid 19 for my first medicine to fight CLL. I am on watch and wait

[AussieNeil Administrator in reply to Funman]

While you should check with your specialist, see healthunlocked.com/cllsuppo...

[Identiy]

Aussie Neil,

I am unable to find the discussion you had re the benefit or otherwise of beta glucan in cll.

Are you able to sent a link?

Thanks

Identiy

[AussieNeil Administrator in reply to Identiy]

healthunlocked.com/cllsuppo...

[Identiy in reply to AussieNeil]

Thanks

[unairdefamille]

Thank you Neil! One topic I do not see is SUPPLEMENTS. Most oncologists are great with traditional meds, but quite clueless about possible supplements that could help with the many side effects, most CLL patients experience. Some GPs know a little more and Naturopaths are not always knowledgeable about CLL. I believe integrative doctors could be of help. But I wonder if anyone in this group of wonderfully helpful people have found alternative ways.

[AussieNeil Administrator in reply to unairdefamille]

I note that you mentioned taking mushroom supplements and cannabis oil earlier. You'll find many previous discussions about possible concerns of taking mushroom supplements, as summarised here: healthunlocked.com/cllsuppo...

You also need to be careful about potential interactions with treatment drugs, with this post on ibrutinib interactions also largely relevant to acalabrutinib: healthunlocked.com/cllsuppo...

Finally, if you are taking cannabis oil, you are likely reversing the effect of acalabrutinib in driving your CLL cells out of your nodes and bone marrow, reducing its effectiveness. See the section on cannabis oil in my reply to this post, where you will also find many, many references regarding the claimed effectiveness of many claimed cancer curing supplements:

healthunlocked.com/cllsuppo...

Neil

[unairdefamille]

Thanks, Neil. I do not take mushroom supplements. I was just inquiring about it. However I was prescribed Light cannabis oil and will read the link you shared. I really appreciate your input. 😊🙏🏼

[unairdefamille]

Hi again, Neil. I could not find INFO about CANNABIS OIL damaging interaction with ACALABRUTINIB. Could you please tell me where specifically I could find it? THANKS.👍

[AussieNeil Administrator in reply to unairdefamille]

The relevant sections from my reply to the Good article on navigating complementary cancer treatments healthunlocked.com/cllsuppo... "CBD oil can interfere with BTK inhibitors (Acalabrutinib, Ibrutinib, etc) and other prescription drugs, including prednisone. That's because CBD oil is a potent inhibitor of CYP3A4, medicinalgenomics.com/wp-co... the Cytochrome P 450 liver enzyme responsible for metabolizing many drugs. Using CBD can effectively cause overdosing on various prescription drugs that use that pathway, thereby increasing the associated side effects of those drugs.

healthunlocked.com/cllsuppo... "

and

"CBD has over 530 drug interactions, including BTK inhibitors, such as Acalabrutinib, Ibrutinib, etc - see below. Several of these interactions are "major" and can lead to serious harm or even death.

- drugs.com/drug-interactions...

More specifically with relation to cancer and CLL in particular

- healthunlocked.com/cllsuppo... which concludes that cannabis may encourage the movement of CLL cells from the blood into the nodes, spleen and bone marrow, where they propagate and interfere with blood cell production!"

BTK inhibitors primarily work by driving CLL cells into the blood supply, so that they lose the protective microenvironment they establish in the lymph nodes and thereby succumb to apoptosis. Hence per the referenced ASH paper, CBD oil could be countering the effect of acalabrutinib.

Neil

[DianeSH]

How do I read my report from mayo clinic? All my doc says so far is that I have the precursor to CLL and will do blood tests again in 6 months. I have read there are different forms of this precursor thing...some stay the same forever, some eventually turn to cll, etc. Is there someone here that can make sense of my report if I post the details? I had the flow cytometry test and it says there are two different communities of B cells but this is all greek and new to me. I am 75 female and survived kidney and uterine cancer...and now a possible third cancer? So not funny

[AussieNeil Administrator in reply to DianeSH]

Hi Diane,

Just post your blood test results in a new post as you've done before, hiding any identifying information. Here's a reminder of how to write a post: support.healthunlocked.com/... At the Share option, select "Community only".

It seems you have Monoclonal B Cell Lymphocytosis (MBL), which you'll hopefully be reassured to learn, becomes quite common as we age. There are low and high count versions. About 20% of those 70 to 79 have low count MBL and are highly unlikely to develop CLL, so many of those around your age have this condition, which unfortunately does increase your risk of infection per: ashpublications.org/blood/a...

You aren't the first to be left confused by this diagnosis: healthunlocked.com/cllsuppo...

Note the low likelihood of MBL progressing to CLL - under 2%

Neil

[Miloj13]

Hi Neil , Im on Calquence My sight is deteriorating and I need cataract surgery any problems going ahead with this ?

[AussieNeil Administrator in reply to Miloj13]

A few members have successfully had cataract surgery while on BTKi therapy. To reduce the risk of bleeding, per the official website, calquence.com/ with my emphasis, "Before taking CALQUENCE, tell your healthcare provider about all of your medical conditions, including if you:

have had recent surgery or plan to have surgery. Your healthcare provider may stop CALQUENCE for any planned medical, surgical, or dental procedure."

Neil