Day 2 of Obin, Ibutinib, Venetoclax Clinical Trial

[thompsonellen]

Hi everyone,

I completed the second day of the trial, and I couldn’t be happier about my decision.

Day 2 was “Groundhog Day,” i.e. a repeat of day 1 in all ways except we ramped up to 900 mg from 100 mg of obinutuzumab infusion. I had maybe 5 minutes of slight stomach and lower back pain, but that was it. I was told that this is what I can expect from the future “obin” infusions, too.

My counts also went White Blood Cells plummeted just in one day of the baby dose. My other counts took a hit, but this is to be expected because they have highly hydrated me to try to minimize the risk to my liver which has to process all the cell destruction.

White Blood Count 32, down from 92 (normal high)

Red Blood Count 2.99 down from 3.39 (normal low 3.8)

Hemoglobin 8.8, down form 9.7 (normal low 11.7)

Platelets 137, down from 179 (normal low 150)

Absolute Lymphocytes (the bad WBCs) 21, down from 83

Neutrophil Segmented (the good WBCs that fight infection) 23, up from 8

I also have noticeable progress with my rash which isn’t itchy and looks a lot less “angry.” This might be the result of the steroids and Benadryl they give you prophylactically, but I’ll take it. I really was getting to the edge of what I could take with that. My face noticeably changed shape in the last day. It’s more heart shaped and less round because the lymph nodes have reduced. My eyes aren’t running all the time and while my nose is still slightly stuffed, it’s 75% better.

I was the success story today. Unfortunately, someone else had to drop out of a clinical trial. The nurses were bummed, and I’m glad I was able to provide a bright spot.

They only had to watch me for one hour post treatment, so I was out the door by 4 pm. I had planned to stay overnight an extra day this time around, just in case, but I will easily be able to handle flying back. I’m on a 7:15 am plane, and it will be nice to be home. They say I should expect to feel tired on Friday, but that’s OK. At least I know it might be coming.

As far as restrictions, I don’t have any major ones. No grapefruits or oranges. No St. John’s Wort or any homeopathic remedies. If my platelets are low, I can skate, but they don’t want me taking risks that might cause a fall and induce internal bleeding. That’s it.

So far, so good. Let's hope I tolerate the other meds as well, but even if I don’t, this drug isn’t FDA approved to treat people who haven’t had other treatments, so it’s a win either way. The next drug is what they would have given me at Penn (ibrutinib) and I'm fairly confident I'll be able to handle that, too,

Thanks for reading, and let me know if you have any questions.

PS I will be putting this on a blog for family and friends. Please let me know if you all think it makes sense to cross post here and if you think this is useful for the community.

[Justasheet1]

Thank you again Ellen for posting. I'm so happy for your early success. One day at a time, right? 😃

And please do cross reference your journey. You are truly a pioneer right now.

Jeff

[thompsonellen in reply to Justasheet1]

Yes. We just need to take the best fork in the road given the data we have, and do our best one day at a time. But it's nice to have a few successful days sprinkled in, righ?

[CLLCalifornia-USA]

It's nice to hear you so positive and upbeat. I'm sure you will breeze through your treatments brilliantly. Such good news, thanks for sharing. Sally

[Elizabetha]

Thank you for sharing your treatment journey. Hope all continues to go well. X

[PE1234]

Brilliant .Thank you for sharing with us .I look forward to hearing all your news on the trial .

Brenda🌞🌞

[6137L]

Keep the posts coming !Delighted you are doing well ... great to have it explained so well . xx

[Salohcin]

Thank you for sharing, keep the posts coming and good luck

[MsLockYourPosts Passed Volunteer]

Off to a good start! Is it all oranges or just Seville oranges (bitter oranges used in marmelade) that are restricted? I was not told to restrict grapefruit or Seville oranges when I got Gazyva last year, but they were already restricted because of one of my other medications.

[thompsonellen in reply to MsLockYourPosts]

They told me all "citrus" but I cook, so this is a pretty broad term to me. When I pressed about it, they said all grapefruits and oranges. I know the online paperwork for ibrutinib says blood oranges. I guess they think rather be safe rather than sorry. I'm still doing limes and lemons (juice in dressings, etc.), but I feel like I should ask about it again.

[MsLockYourPosts Passed Volunteer in reply to thompsonellen]

Usually for medications it is just Seville oranges and grapefruit. My cardiologist recently told me I could eat an occasional grapefruit, which I was thrilled about, as I have a wonderful tree.My family are long time citrus and avocado ranchers, so it's something on my radar. Now I'm curious about the oranges.

There is a thread on CLLForum.com about your trial that you might want to check out and maybe add to. Lots of very encouraging news and possibly people whose paths you will cross. It's great to see people comparing results at various stages of the trial there.

[thompsonellen in reply to MsLockYourPosts]

Now that I can't have them, I see grapefruit all over menus and want those items. Is t that funny? The postings on that forum inspired me to write mine and I should be more active there.

[MsLockYourPosts Passed Volunteer in reply to thompsonellen]

I never liked grapefruit much as a child and my mother prepared them often, all sectioned and ready to scoop up, for breakfast. About the time I started to appreciate them I wasn't supposed to eat them. Such is life.

[virdieblue in reply to MsLockYourPosts]

Just back from the onc/hemo. He says Seville oranges only

[thompsonellen in reply to virdieblue]

That's what I thought. I wonder why they were more restrictive?

[virdieblue in reply to thompsonellen]

I guess its safer - unless there's a label how many of us could tell what kind of orange it is?

[MsLockYourPosts Passed Volunteer in reply to virdieblue]

Seville oranges are "bitter oranges". They aren't commonly found in the US. I doubt that they would be confused with other varieties. I'll have to look for some. I have never actually seen them here.

[Cllcanada Top Poster CURE Hero in reply to MsLockYourPosts]

No St John's Wort either, common used OTC head med

[MsLockYourPosts Passed Volunteer in reply to Cllcanada]

It's another one that is ruled out for multiple prescription meds. It's important to always check with all of your doctors, not just your oncologist, before adding any supplement.

[tekusa]

Wow! That is fabulous that you responded well. Is there a Day 3? Do you get Obinituzumab again today? Sorry if you already stated this. I get ready for work at 6:00 AM and read as many emails that I can before starting my day. Please keep posting I like reading how the changes occur from the treatments. Thanks. I go to OSU and Penn as well. Also to NIH for Nat Hist of CLL study. Best Regards Tom

[thompsonellen in reply to tekusa]

Day 3 will be next Tues. They do the first obin dose over two days so your body can adjust to it. Then it's day 8, 15 and 22 of "up to 8 cycles." I have the full calendar at home, and I'm not sure if I'm scheduled for 8 cycles of obin. I just know my last appt before we go to 3 month intervals is August 17, 2017. That's when they will cut ibrutinib and venetoclax.

It really helped me when people answered questions about their trials, so I want to do my best to pay it forward and answer as many questions as I can. As we say in SandyC's post yesterday, there are other people struggling with decisions about trials and I think the more info that is out there, the better.

[tekusa in reply to thompsonellen]

Thank You Ellen.

[prosecco1]

Hi, glad everything is going well, very happy for you.

Please do keep us updated

Elle

[Elslee]

Good to here that when do you have to go back

[thompsonellen in reply to Elslee]

Next Tues.

[nvp815]

I could not be more happy to hear about your early positive results!!! Wishing you continued progress and I look forward to reading your future posts.

Have a wonderful weekend:).

Nan

[lexie]

Thanks again and I want to keep reading your posts on here! I like your attitude.

[Ajkeli73]

Wonderful to know day two went so well! Thank you for holding the torch high for all of us on this dark unpaved road.

[Ajkeli73]

I love grapefruit. One of my favorite fruit. Wonder why no grapefruit?

[AussieNeil Administrator in reply to Ajkeli73]

When you appreciate that most prescription drugs are derived from chemicals originally produced in plants and other living organisms that need to regulate the concentration of the different chemicals made by the organism, it shouldn't be a surprise that there are the occasional interactions. Grapefruit just so happens to have chemicals that interact with more drugs than other foods:

fda.gov/downloads/ForConsum...

en.wikipedia.org/wiki/Grape...

drugs.com/article/grapefrui...

ncbi.nlm.nih.gov/pmc/articl...

and plenty more if you do an Internet search for 'grapefruit drug interference mechanism'

Neil

[Shortcake2]

My white count is at 19.6 and 21.9 at highest. I'm still learning about all this, so how high do your numbers get before you start treatment?

[thompsonellen in reply to Shortcake2]

It really depends, but you aren't close. My numbers weren't that high (97) but I had huge lymph nodes everywhere (one in my stomach is 11 x 5 cm) and they don't like to let 17p patients go that long. My bone marrow biopsy showed 80% infiltration, so it was time. However, you can have a count of 300 and still not be in treatment. They really wait for you to be symptomatic (e.g. night sweats) and there is a standard that you can google that shows guidelines used for time to treatment. In my case, my WBC doubled in 30 days. That was a trigger as were the lymph nodes. Good news is I think you are fine for a good while.

[Shortcake2 in reply to thompsonellen]

Thanks, my nodes swell and I have had some night sweats but nothing serious. My oncologist said the nodes could get as big as a baseball, and I'm no where near that. But the nodes are not painful, I guess you would say uncomfortable.

[thompsonellen in reply to Shortcake2]

My feeling is there is no cure, and the moment your start treatment, it's treatment - relapse cycles (unless a cure comes along). I only had 6 months w&w because mine is so aggressive, but I think your oncologist will know when it's time and I hope it's not for a long time in your case.

[Shortcake2 in reply to thompsonellen]

What does 17p patient mean?

[thompsonellen in reply to Shortcake2]

That the short (petite) arm of your 17th chromosome is missing when you are 17p deleted. That is where your body makes proteins that know how to kill cancer cells so your disease spreads more quickly when you are 17p deleted.

[Shortcake2 in reply to thompsonellen]

Met with Oncologist Friday and it appears my lymphoma is getting worse but the leukemia is stable. He's ordered the dreaded bone marrow test, and CT scans to be followed up by PET Scan. Of course I have to wait a month to get the tests done, so everything is watch -wait-and-worry.

[Shortcake2]

My oncologist has suggested chemo for the tiredness but that seems extreme to me. Has a anyone tried taking B12 shots to build up energy?

[AussieNeil Administrator in reply to Shortcake2]

Ask your doctor (easier to see than your oncologist and they order these test regularly) to check that all processes that could be causing you tiredness are working well, i.e. thyroid function, iron/ferritin studies, B12/folate studies, Vitamin D. If our B12 is low, most of us can correct that via a supplement (tablet), but some of us lack the means to metabolise that and need B12 shots. Try some light exercise when tired if you aren't too tired, otherwise rest. If you aren't physically fit, improve your fitness. There's much you may be able to do to help you compensate for CLL related fatigue, but even these tips may only partially help. If you are still struggling, try pacing yourself better.

I know how frustrating the deep fatigue and woolly thinking can be...

Neil

[Shortcake2 in reply to AussieNeil]

Thank you, I will do that. I have an oncologist spot tomorrow.

[Shortcake2 in reply to AussieNeil]

My husband is constantly telling me to pace myself. I'm getting better at it, but I still take a 2 hr nap just to make it thru the day.

[casanova]

Thank you for your really detailed posts and I am so pleased that you are feeling well and upbeat about the treatment. I look forward to reading more.

I am coming up to decision time again concerning what can we try this time so it is always good to learn of new treatments and patient reactions.

May you continue to keep well throughout and beyond your treatment.

Maureen