CLL, Spleen Recovery+recommendations

[SCE2AUX]

Hi All,

I was hoping to draw on your knowledge, wisdom and experience in dealing with CLL.

I was diagnosed in 7/2008 and for almost 11 years was doing quite well but 3 months ago my spleen started to get enlarged, wbc were 76K and swollen lymph nodes to say the least.

I had my first dose of Gazyva or Obinutuzumab was a month ago and have recently taken 2 doses of Leukeran as well. I was only able to take the initial dose of Gazyva due to a reaction to the medication.

Initially after the chemo treatment my spleen felt much better, meaning no pain or throbbing and my wbc dropped from 76k to 16K. I did have a ultrasound done on Friday and am awaiting hearing for my MD on Tuesday. But now I can feel the pressure and uncomfortable feeling with my spleen again.

I am doing twice daily castor oil packs over the spleen, added dandelion tea 3 times a day, reishi mushroom twice a day along with CBD-A tincture, turmeric 825mg and EGCG 725mg

So, I was hoping this community could help me with figuring somethings out:

I heard of the 10:1 ratio of Curcumin to EGCG but which to which and what are the doses of each.

The spleen is swollen so what has been others experience in terms of its recovery and can it recover to "normal" on its own?

So, any and all feedback would be much appreciated!

[AussieNeil Administrator]

Hi and welcome to our community.

I'm a bit concerned about how experienced your medical team are, because Gazyva is well known for causing rather dramatic responses on the first infusion, with subsequent infusions going fine. What actually happened and have your subsequent infusions really been ruled out?

Secondly, I would not recommend taking anything else other than approved/prescribed medications while being treated. There's the risk of interactions and even the possibility of the antioxidants in the EGCG countering the effects of the leukeran on the CLL DNA. Continuing with Gazyva is your best option to reduce your spleen size if that's possible. Leukeran/Chlorambucil a very old drug and works fairly slowly in comparison.

If you share where you live, you may get some suggestions on who to see near you for a second opinion. If you live in the States, you can get a free on-line video consultation via the CLL Society's Expert Access program: Cllsociety.org (You might want to make your post private to our community by editing it via the "More v" and changing the option to "Who can see my post?")

Neil

[PlanetaryKim]

I think the important information will be the size of your spleen, as shown on the ultrasound you'll be getting results on soon. In my case, my spleen was enlarged prior to treatment, but not causing me pain. It was 16 cm instead of 11 cm. And it reduced to normal size within first month of ibrutinib, and has stayed normal size for my last 2 years on ibrutinib. Your treatment is different. I don't know how that performs on spleen size.

Hope you get some useful information from your doctor on Tuesday.

kim

[LovecuresCLL]

Agree with Neil.

Gazyva is not a “chemo”....it is a very effective immunotherapy targeting CD20 receptors on the tumor cells. The additional home remedies that you are taking could be negatively affecting your spleen and stressing your liver and possibly interacting with your medications.

I think mixing FDA approved medical treatment like Gazyva and Leukeran with high mg strengths of a concoction of substances that are completely unscientific and unproven is risky.

Have you spoken with your CLL specialist about any of this? Who advised you to take this concoction?

We have many options now to effectively treat CLL right now.

I hope you find the help you need and start feeling better soon.

[SCE2AUX in reply to LovecuresCLL]

Thanks for the feedback and as far as the alternate supplements was going off from talking to others about CLL.

But I have reduced to basically nothing after reading posts on here. The main issue right now is my spleen still seems to be about as enlarged from when I first started my treatment despite the drastic drop in wbc. I am doing castor oil packs on it twice a day for now.

[LovecuresCLL in reply to SCE2AUX]

Give the spleen time. It may decrease in size too. It may take longer to shrink. As long as it’s not growing that is good. Right?

Castor oil paks act as a laxative. Not sure how that relates to the spleen.

Good luck and hang in there.

Best wishes,

-J

[Canuck901 in reply to LovecuresCLL]

Castor packs good for inflammation

[Smakwater]

SCEAUX,

I am in with both AussieNeil and Lovecures CLL.

I had a reaction to the 2nd Gazyva infusion, shakes and vomiting. The nurse slowed the infusion and I recovered. The next five months of Gazyva were of no consequence other than all nodes and blood counts returned to normal.

Please expound on what you mean by reaction.

JM

[SCE2AUX in reply to Smakwater]

Basically chills, what is called "rigors" or muscle spasms and nausea. But that was alleviated by meds during the infusion. My md wanted to wait and get my as he called ot "tumor" load down before the next round so that is why I am going back in 2 weeks for my 2nd dose of Gazyva.

As I mentioned to others, the main issue is my spleen still seems as enlarged as when I first started treatment so am wondering how others recovered.

[Smakwater]

Sounds like your MD is on track.

The spleen and lymph node responses are very much individual measures.

We may need to look for some research documentation for averages based on accumulative data.

JM