Adding additional chemo

[lyn26041]

I am being treated for CLL for the second time after being in remission for 9 years...which is a blessing. I am currently taking oral Imbruvica... My most recent bone marrow biopsy showed little change after 3 months. If there is still no change in November, my Oncologist will add either .bendamustine and rituximab via infusion or an additional oral med called idelalisib. I am told the idelalisib carries many side effects.... Thoughts anyone? I am looking for some help in deciding which course of treatment I will choose if needed.... Thank you so very much for any help you may be able to give me...

[Cllcanada Top Poster CURE Hero]

I would suggest a second opinion with a CLL specialist... there are combination therapies currently with ibrutinib in clinical trial., but clinical use at this point is still a bit of an unknown...

Here is the Imbruvica (ibrutinib) +Bendamustine/rituxan trial, still accruring data

clinicaltrials.gov/ct2/show...?

Idelalisib does carry black box warnings on secondary PCP infections and colon... but recent problems were seen in firstline combinations.

Again these are not approved, so a bit of a grey area. Get the best expert advice you can, from doctors running trials with these.

~chris

[lyn26041 in reply to Cllcanada]

Thank you Chris.... I appreciate the feedback..

[Cllcanada Top Poster CURE Hero in reply to lyn26041]

Here is the HELIOS trial with Imbruvica (ibrutinib) and Bendamustine/rituxan

thelancet.com/journals/lano...

This trial showed that Imbruvica (ibrutinib) and Bendamustine/rituxan as better than Bendamustine/rituxan and placebo...

Somewhat similar to your case, but not exactly the same...

[MsLockYourPosts Passed Volunteer]

I have never heard of ibrutinib and idelalisib being used in combination. Has anyone else?

You might want to lock your post to community only (Click on the little down arrow to edit). Some members are hesitant to respond to posts that aren't locked.

[Cllcanada Top Poster CURE Hero in reply to MsLockYourPosts]

I checked the clinical trial database and couldn't find anything, that is what made me concerned about this use clinically.

I think you misunderstood... there are patients taken off Imbruvica (ibrutinib) and put on idelalisib... this is done.

~chris

[lyn26041 in reply to Cllcanada]

My Oncologist said if my next bone marrow biopsy is not showing improvement, he will add either .bendamustine and rituximab to the Imbruvica, or add the idelalisib.......however he said that the idelalisib has many side effects... I plan to opt out of that option and go with the infusion cocktail....

[lyn26041 in reply to MsLockYourPosts]

Gotcha..... I am new to the group....just learning the drill

[LynnB1947]

Lyn ... I started on rituxan & imbruvica back in 2014. After 3 months, my bone marrow numbers had dropped to 20-30%. Prior numbers were 40-70% at diagnosis. My dr said that the bone marrow numbers should continue to drop. I received 4 weekly rituxan IVs at the start & then switched to monthly for another 9 months.

I'm being treated for SLL at MDA and have been on imbruvica since April 2014. CT scans continue to show no enlargement of lymph nodes. The nodes decreased dramatically in size after starting on rituxan & imbruvica.

I wish you well in your new treatment.

Lynn

[lyn26041 in reply to LynnB1947]

Lynn.....this is the kind of info that I am looking for.... I am so glad you are doing well! Did you have any adverse side effects?

[LynnB1947 in reply to lyn26041]

Lyn ... Side effects:

+ low WBC & ANC after 3 months so I received 3 Neupogen injections but blood counts have been fine ever since

+ digestive tract ... minor problem at first for a day or two

+ muscle & join pains .... yes, when i overdo it

+ spitting nails & sore areas near end & corner of nails ... I've used superglue on spitting nails

+ pimples on nose or chin ... cover with my mustache & goatee

+ fatigue ... yep - 45 minutes of weedeating will do me in but its got to be done

+ diminished appetite ... usually at evening meal but I have more than make up for it as I had lost about 35 lb during my initial diagnosis, W&W, and treatment (rituxan & revlimid), and I've gained about 1/2 of it back.

I've had no bleeding issues & no atrial fibrillation. BTW, I'm on low dose coumadin. I have not been hospitalized since initial diagnosis in Sept 2013.

Lynn

[lyn26041 in reply to LynnB1947]

Lynn, you have been so helpful and I appreciate that. I have been battling a lot of fatigue with Imbruvica....so I will need to be careful if another med is added... My joints and bones have been painful......like they are bruised. I have had very unpleasant night sweats and always have .......it was one of my first symptoms of CLL... I am post menopausal, so it is not caused by that.... If I break out in pimples on my nose chin, I can be hopeful that I can grow a beard to cover them like you did...... lol..... I like to keep things light and humorous. I have to... I am not going to crawl into a fetal position just because I have cancer..... I refuse to allow myself to give up...

[LynnB1947 in reply to lyn26041]

I forgot to mention that rituxan kicked my butt. I ran low-grade fever late in the day for about a week after getting rituxan, and had reduced appetite for about 2 weeks. This repeated after every rituxan IV ... I still have night sweats. They may be more related to the SLL than the treatment although they seemed to be heavier when I was taking rituxan. Oh, and the fritzy, wavy hair. After 18 months or so my straight hair became unruly, and still is. Best trick is to not rinse out the conditioner after shampooing. And then there's my hair color ... sorry no change.

[lyn26041 in reply to LynnB1947]

I am sorry you are having the night sweats so bad.... Mine begun early on with the CLL, and I blamed it on the menopause, but when I saw the Oncologist he told me it was no doubt from the CLL... I am single.....and after a 30 year failed marriage, I had decided to put myself out there and begin going to dinner with gentlemen to get out of the house.... My appetite is not the greatest, but I found myself cooped up in the house way too much. The fatigue prevented me from getting out and walking like I was accustomed to (two miles a day)....but between the fatigue from CLL and the chemo, my fatigue won out...I am trying to get my stamina built back up..... Well, a friend of mine introduced me to a gentlemen a year ago, and we began seeing each other on a regular basis...... I was so embarrassed when I was dripping wet with only a sheet on at night...... My fella friend was most understanding.....but I will never get used to it..... I am trying to persevere.....and beat this thing..... Last week my Oncologist told me that there is a 90% chance that I will not go into a remission.... We just need to pray that the Imbruvica, and possible added chemo cocktail will hold the CLL at bay...... If not......I am candidate for the BMT.

[LeoraH]

Lyn -- I'm vaguely recalling a video interview with a CLL researcher -- maybe Dr. Jeffrey Jones from OSU?? -- in which it was suggested that adding Ibrutinib to BR improves results, but that it isn't clear that the combo is any better than Ibrutinib alone. I agree with Chris. Before adding another drug to Ibrutinib, I'd want to discuss this with a real CLL expert who is actively engaged in the on-going research on CLL and knows which combinations of approved drugs are the most promising.

My CLL expert at Ohio State is quite negative about the continued use of BR as is Dr. Furman at Cornell. I have a lot of respect for their opinions. Maybe ading Obinutuzumab (Gazyva) would be an option for you. I'm in a trial using Ibrutinib, Obinutuzumab and Venetoclax and the results look very good so far. But again, if it were me, I wouldn't be comfortable trying any combination therapy without first consulting with one of the top CLL experts.

If you want to get a second opinion, let us know where you live and we can help steer you to someone really good.

Best of luck to you,

Leora

[lyn26041 in reply to LeoraH]

Thank you Leora..... I appreciate your input.... I have 3 months until my next bone marrow biopsy to think about it.... And while we are on the subject, there surely has to be a better way to do those bone marrow biopsies to avoid the pain of being drilled like a coal miner....! I mean, give me a Valium/Morphine drip like they give for setting dislocations... Whatever they give me in the IV that is supposed to relax me is definitely not working.... I felt every darn second of the pain......and they went in the last time to take out a chunk of actual bone... Ouch....that straight up hurt like heck. Give a girl a break!

Lyn

[Cllcanada Top Poster CURE Hero in reply to lyn26041]

Are you under the care of a large hospital... what country?

In the majority of ibrutinib patients there is a absolute lymphocyte count (ALC) spike up as the nodes are cleared and then the counts begin to fall ... could take six months or more... bone marrow clearance I have no idea about...

Do, you have other complications? cytopenias etc. that might need BMBs?

I strongly recommend you get a second opinion. Let us know your closest major city and we can perhaps recommend a doctor, who is well versed in CLL...

~chris

[lyn26041 in reply to Cllcanada]

I am under the best of care at the best hospital in the country,....Vanderbilt in Nashville TN.... I have full trust in my Physician...

[Cllcanada Top Poster CURE Hero in reply to lyn26041]

There is always Dr. Ian Flinn at Sarah Cannon, as a second opinion if needed... a renouned CLL specialist.

[LynnB1947 in reply to lyn26041]

Lyn ... I've been in the bone marrow torture chamber & when we switched from local dr to M.D.Anderson, we insisted on general anesthesia for BMB. They use the Michael Jackson drug ... propofol. I go to sleep & wake up 15-20 minutes later & it's all over. If I didn't have 2 band-aids (bilateral BMBs), I wouldn't know they had done anything. Removing the IV tape is the most painful part (I'm a hairy guy).

Lynn

[lyn26041 in reply to LynnB1947]

Now THAT is the way to roll with the BMB!

[Kmiller in reply to LynnB1947]

Wow. i have mine at MDA and don't get general.. Just a shot

[LynnB1947 in reply to Kmiller]

My wife insisted. My doctor said, "Okay." And I'm glad. Had my first bilateral BMB at MDA back in October 2013, and then again in July 2014. Both with propofol. Dr. said we won't do it again unless we're changing or stopping medicine. My diagnosis is SLL, & I've been on ibrutinib since April 2014.

[lyn26041 in reply to LynnB1947]

I am wondering if the reason most Oncologists do the BMT in office is for the surgical payment.... If it is done in house at the Hospital, the Oncologist loses that surgical payment.... I am going to suggest having it done at Vanderbilt in house in November.... I cannot sit down for a couple days because of the discomfort after the procedure.... I know that the pain afterward will still be there but since they pull 3 samples plus a piece of bone.....I just have to do it at an atmosphere where I am not fighting the pain and dealing with pain up my back and down my left for a few days afterword... I don't know what kind of hoops I will need to jump through to get it done in house as Vanderbilt.....but is just has to go that route........ Thanks again Lynn...

Lyn

[MsLockYourPosts Passed Volunteer in reply to lyn26041]

I was told that anesthesia is more dangerous than using a local when my first one was scheduled. I had two done with a local only back in 2003 and 2005 and honestly don't remember pain, just panic. I had absolutely no pain afterwards. My last one was done knocked out and I did have twinges afterwards for a couple of days, but not even enough to need a Tylenol. A lot depends on who is doing the procedure. I was told by a nurse that if you are out they can use a bigger needle to get the samples, which may explain the twinges the last time.

I agree with Chris about getting a second opinion from Dr. Flinn. If he and your doctor are on the same page it would be very comforting, and if he has a different perspective it might lead to something better for you. He is also involved in trials and might have a trial that would fit your case.

[virdieblue]

At what point while taking Ibrutinib should you see results in the bone marrow? (I'm about to complete 2)

Virginia

[LynnB1947 in reply to virdieblue]

My first scan was at 3 months & all lymph nodes were greatly reduced & no sign of active disease. I have SLL so didn't have indications of cancer like CLL patients have in blood. Also at 3 months, they did a bone marrow biopsy & reduction was from 40-70% down to 20-30%.

Lynn

[MsLockYourPosts Passed Volunteer]

VaCooper - Two months?

[izabella7]

My husband start drinking imbruvica for 1 month he stop for 3 days and he has fever ???? And itchy in his foot. This is normal that happen!!

I'm really worry😞.

[Cllcanada Top Poster CURE Hero in reply to izabella7]

Hi izabella7

Was your husband advised to stop taking the capsules by his prescribing CLL doctor? Stopping and restarting Imbruvica (ibrutinib) is a decision only a doctor should make.

If he hasn't contacted his doctor he should do so as soon as possible.

~chris