Rutuximab

I was first diagnosed with CLL in November, 2017. My Oncologist immediately started me on 60mg Prednisone and began reducing the amount commensurate with my improved bloodwork.

After over a year on Prednisone and with my hemoglobin numbers steadily improving, my Oncologist wanted to eventually get me off of Prednisone so in 2018 she ordered the addition of Rutuxan (Rutuximab). The first weekly injection lasted about 7 hours. The next 3 weeks each injection lasted around 5 hrs. Within a short few weeks, after my fourth and final Rutuximab injection my blood work results began showing marked improvement. So my dosage of Prednisone was lowered considerably. My bi-weekky bloodwork showed significantly better numbers and in 2019 my Oncologist discontinued my Prednisone prescriptions.

In the Fall of 2019, my periodic bloodwork results had stabilized and my CLL was pronounced in remission. January, 2020, my Oncologist stated that results of my bloodwork were such that I was told that my CLL was in remission. A bloodworkup in March brought another confirmation.

I am scheduled for my next bloodwork in mid-August but don't see my Oncologist until mid-November. I am glad to report that I feel very good, especially following the discontinuance of Prednisone. I had been reticent to receive the Rutuximab injections because of side effects but agreed to receive them after my Oncologist assured me that the odds were in favor of my not having any. She was right.

[PlanetaryKim]

That is great news! Thanks for the report. Did your neutrophils drop low at any point because of the rituximab? Asking for myself since I am probably going to begin rituximab soon.

[Hidden in reply to PlanetaryKim]

PlanetaryKim, at the moment I don't recall much of anything negative about the state of my neutrophils. What I do remember is my Oncologist stating that all my numbers were improved following the Rutuximab injections, and to date they have maintained at acceptable levels. Don't know if what I have shared is helpful but I encourage you to accept your Rutuximab injections with confidence. I will pray for you. My strong prayer life has been wonderfully bolstering.

[PlanetaryKim in reply to Hidden]

Thank you LakotaOne! Wishing you continued good health!

[Hidden in reply to PlanetaryKim]

And I wish and pray the same for you, Planetary Kim. Stay Strong in our Lord.

[PlanetaryKim in reply to Hidden]

I'm an atheist. But I do stay strong.

[LeoPa in reply to PlanetaryKim]

That doesn't mean his prayers can't help you in case you're wrong 😊.

[PlanetaryKim in reply to LeoPa]

Wasn't objecting to or commenting on his own intention to pray for me. He is free to do as he wishes. But telling me (or anyone whose personal belief system is unknown to him) to "Stay Strong in the Lord" ...that is rather crossing a line here. It's incredibly presumptuous because it presumes that his "Lord" is universally recognized by all 15,549 members on this global forum. That sort of arrogance and insensitivity/blindness to belief systems other than his own actually does require comment.

[AdrianUK]

I’m glad your rather unconventional treatment program seems to be working for you. At this stage it might be a good time to get a second opinion from a CLL specialist about the way forward. If you are in the USA (which I guess because you say you are seeing an oncologist which only happens in the USA as far as I’m aware) then the CLL society offers a free service if your insurance won’t cover it. It’s just good to get a second set of eyes and to discuss what the top specialists would normally do for you. Each case is diffeent of course and there may be good reasons for you having this unusual treatment choice. Did your oncologist explain why he wanted to proceed the way he did?

[mk2045 in reply to AdrianUK]

I agree with your take on this. A CLL specialist would be very advised. Depending on where you live one might be within reasonable driving distance. Even several hours is worth it. The specialist can then coordinate with your local doctor. There is also the option for a "tele-visit" with a specialist through the CLL society. Please do find a specialist!

[BluMts in reply to AdrianUK]

Just seen this. Thank you for your comment Adrian. Well put as I was getting a bit bewildered reading here and concerned.

[64lusso]

This sounds exactly like what I went through to treat the AIHA I wound up with just prior to needing treatment for my CLL although my Rutuxan sessions weren't as long. I've never heard of this being used for CLL treatment but if it worked then great! Rutuxan is the R in FCR and BR chemo treatments so it's interesting to hear it worked all by itself.

[Hidden]

Well, I could have called my Cancer Doc a Hemotologist because recognized as an expert under both titles. She's one of the sponsoring Physicians of Cancer Specialists of North Florida and is that organization's top CLL Specialist. So, I won't likely seek a second opinion as my state of remission is holding, etc.

[BluMts in reply to Hidden]

Hidden, I'm interested in treatments in Florida.

So glad your CLL has been controlled. One thing I'm wondering about that you could clear up. Was the Prednisone given solely to treat your CLL or did you at that time have some other condition?

All the best for continued success.

[Palmetto]

I think each case is different. Right now with just Rituxan and Prednisone husbands counts are perfect in less than 2 months on that regimen with zero side effects from treatment. It was done to treat AIHA but put the CLL in remission. But now facing infusions of Gazyva next week and 28 days later starting Venetoclax, I wish we would just monitor for a while. Wishing you all the best. I know some of the new treatment methods are working for many but there are side effects that go along with. I do believe that prednisone and rituxan were tried and true treatments for many years and still are being used today. Perhaps those with more risky prognoses and riskier markers as well as more tumor burden to need the more advanced treatments, but if this works for you, if it's not broken don't fix it All the best to you.

[MsLockYourPosts Passed Volunteer in reply to Palmetto]

Rituxan and prednisone for CLL have not been "tried and true treatments" for CLL, though they are used for AIHA, and might be used for some CLL. Was your husband's treatment specifically to treat AIHA with the intention of starting him on Gazyva / Venetoclax when the AIHA was under control? Have you expressed your concerns about not monitoring for a while? You are entitled to an explanation about why the current plan is felt to be best going forward. Second opinions are also a good idea if you feel conflicted.

[Palmetto]

Hi sorry if I used the wrong terminology I was just saying that steroids have for many years probably close to 20 been used to treat CLL before the more novel agents were available I think Rituxan was used in combination in trials starting around 2008 in an article from the NIH. Some people I have heard were strictly on chlorambucil and were maintained on that for years so each case is different I just think that at some point we need to balance the side effects of the more novel agents with the length of overall response in my husband‘s case he has had rounds of Gazyva twice each time with almost 2 years to treatment again with no side effects at all yes this time the treatment with Rituxan and steroids was for the anemia but in doing so it reduced his lymphocyte count from 70+ percent down to 20 with all other counts normal . His neutrophil count is the best it’s been in years at around absolute count of 5.4 yet the doctor still wants to treat the CLL.

I did ask why he needs Gazyva before starting the Venetoclax And his office called back to say he does need it I know that the Regimen is Gazyva for 6 months and Venetoclax for a year then stop. Since his bloodwork is already completely normal after four rounds of Rituxan and steroids it seems overkill to me to give intensive Gazyva I could understand the regimen if the person was in a bad phase of the CLL and needed to have tumor burden reduced to prevent TLS And it seems the counts now show that that has already happened. I would love to get a second opinion but since we left this doctor last year and the new doctor didn’t even respond when husband was in serious condition with the anemia and now we are back with him and my husband does not want to seem like we are questioning his decision because getting the second opinion requires us releasing his medical records and I know they also contact the attending physician. Again sorry if I stated something that was not accurate.