immunotherapu: not posted for a while but I’m... - CLL Support

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Walfo profile image
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not posted for a while but I’m interested to know if anyone has felt the benefits of immunotherapy with CLL?

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Walfo profile image
Walfo
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AussieNeil profile image
AussieNeilPartnerAdministrator

The immunotherapy component of CLL treatments are obinutuzumab and rituximab, which are in the class of anti-CD20 monoclonal antibodies - hence the name. That's why the older "chemo" style treatments using rituximab (BR and FCR, where the R = Rituximab), are termed chemoimmunotherapy. Obinutuzumab and rituximab aren't used on their own in the UK nowadays to treat CLL, so I'm wondering what is your specific interest in immunotherapy?

Neil

Walfo profile image
Walfo in reply toAussieNeil

Thank you for your informative reply I need to educate myself more and ask the correct questions on my next check in ,

cajunjeff profile image
cajunjeff

Hello Waldo. To add to what Neil wrote, cll can be treated by chemotherapy drugs, immunotherapy drugs and targeted drugs. It can be very confusing as to what cll drugs fall into what category, partly because all three terms can be narrowly interpreted to include only certain drugs. If you use a broader interpretation, some drugs might fall into more than one category. It can be even more confusing because doctors do not all use the exact same definition.

Take chemotherapy, for instance. In the typical context for cll, chemotherapy is used to reference treatments like fcr, which in their simplest explanation kill both healthy and cancer cells in the hope only healthy cells grow back.

In its more broad use, chemotherapy is just using any chemical to treat someone. Tylenol could be considered chemotherapy, but we tend to associate chemo with harsher chemicals used to treat cancer.

As an example of how these definitions get confused, I get my acalabrutinib from MD Anderson in a bag labeled “chemotherapy”. Technically Acalabrutinib is a form of chemo, but using a more strict definition, Acalabrutinib is not chemo, its a targeted therapy.

Neil mentioned rituximab as an example of an immunotherapy for cll. Rituximab seeks out cll cells to help our immune system kill them. But one might also argue, in a broader sense, that rituximab is a specific type of chemotherapy, an immunotherapy, and a targeted drug that targets cll. Even doctors seem to use these terms interchangeably at times. Strictly speaking, rituximab is one of a number of monoclonal antibody treatments that recruit the immune system to treat cll and other cancers.

Then we have targeted therapies like ibrutinib and venetoclax. Targeted therapies seek out cancer cells and target certain processes in cancer cells to kill them. There is an overabundance of the btk enzyme in cll cells. Ibrutinib is one of several btk targeted therapies that get inside cll cells and inhibit the btk enzyme, which allows a cell to die.

Lay people, and even some doctors, can use terms chemo, immunotherapy and targeted therapy interchangeably, which adds to the confusion. It gets further confusing with combination therapies that can combine all three, like adding ibrutinib to fcr.

Walfo, my guess is you were using the word immunotherapy to refer to drugs that are not traditional chemotherapy, lumping immunotherapy and targeted therapy together.

That makes your question an easy one to answer, if thats what you are asking when you ask if anyone on here has felt the benefits of immunotherapy. My guess would be that a good majority of posters on here have benefitted from immunotherapy drugs.

If you have a question about a specific therapy, you will get probably get beter answers than my rambling reply. I did not mean to type so long, but I thought some might be as confused as I am as to these distinctions. Good luck

Walfo profile image
Walfo in reply tocajunjeff

Thank you so much I hadn’t realised how complicated this all is and I am now going to ask more questions of the consultant .

flippingnora1 profile image
flippingnora1 in reply toWalfo

I have been on Venetoclax for nearly a year, and just had one dose of Rituximab. I have another 5 to go each month, so don't yet know the outcome.

WarriorPrincess4 profile image
WarriorPrincess4 in reply tocajunjeff

Thanks for your reply! You have such a good way of explaining things! 🤩

JEEA profile image
JEEA in reply tocajunjeff

Thanks for this Cajubjeff. Even for us who think we understand the possible drugs more or less, this was a most useful explanation which clarified some things for me. Eleanor

InFlorida profile image
InFlorida

Not totally sure of your question.

If your question is if one has benefited from immunotherapy, then yes I have as well as many others. Obinutuzumab (Gazyva) and Venclexta in my case. As mentioned, I’m not sure if that helps with you being in the UK.

RosettaClapp profile image
RosettaClapp

O+V has been available and is prescribed in the UK for a good 10 years on the nhs. There is a protocol much the same as applied internationally for its prescription dependant on symptoms

stevesmith1964 profile image
stevesmith1964

HiI was diagnosed at Stage 4 with 100% marrow infiltration and a 29cm spleen. A PET scan showed is was wriggled with large lymph node one as big as a cricket ball.

I had a 2 unit transfusion immediately and the O+I , I was in uMRD with 240 days. That was 4 years ago, monthly bloods are stable and my 6 monthly flow results show I am still in uMRD.

So I am a fan of Obinituzumab.

SERVrider profile image
SERVrider

There is also a process to reinforce your natural, compromised, immune system by the replacement of Immunoglobulin G (IgG) harvested from plasma donors. This can be intravenously (IVIG) or sub-cutaneously (SCIG). It is known as immunotherapy and is indicated where your levels of IgG, IgM and IgA are found to be below certain levels.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toSERVrider

That's a very good point SERVrider, but IVIG and SCIG are probably better known nowadays as Immunoglobulin Replacement Therapy.

Walfo, I'm glad that you now appreciate that you need to know some of the answer to ask a better question. :) Your post has educated all of us about the different CLL can be treated and I'm sure your next post will be much more focused.

Neil

hhk50 profile image
hhk50

Hello Walfo -

I have been receiving immunotherapy for almost one year now, but not for the CLL; rather for a secondary cancer. I continue on ibrutinib for the CLL. What I will say, however, is that the immunotherapy has been working well for the secondary cancer and seems to be working independently of the ibrutinib. In other words, my blood numbers before and after starting immunotherapy are the same - no interference with the CLL treatment.

Smakwater profile image
Smakwater

Walfo,

The question could be answered more accurately by defining immunotherapies individually. Keep in mind that the term benefit is also subject to individual perspective.

Immunotherapy is a type of cancer treatment that uses the body's own immune system to fight cancer. It works by stimulating or enhancing the immune system's ability to recognize and destroy cancer cells.

My treatment was a combination of Obinutuzumab and Venclexta. Obinutuzumab is an immunotherapy. It is a CD-20 (cluster of differentiation) monoclonal antibody that targets a specific protein on the surface of B cells.

Venclecta is not considered an immunotherapy in that it is a pathway inhibitor that targets Bcl-2 which is a protein that controls cell death by blocking apoptosis, a type of programmed cell death.

Short answer, Yes I benefited from Obinutuzumab. It cleared CLL from my peripheral blood very effectively and I felt much better in a short period of time. Obinutuzumab however, has a relatively short benefit duration, aprox 24 - 38 months. Hence the addition of Venclexta which is known to produce deeper remission through bone marrow activity.

JM

whitewsu profile image
whitewsu

I have received immunotherapy--actually still receiving it. I'm feeling a lot better now with only 5 infusions (Gazaya) and 2+ weeks of Venclaxtra. I was SO fatigued I could hardly make it through my day before. I'm still tired at times, but not like I was.

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