Imbruvica

[oso7672]

3 days ago

Good Afternoon All. I have a few more questions before I proceed with the Imbruvica/Ibruntinib.

1. Did anyone experience any weight loss or gain and if so, how long was it until you experienced them.

2. Some of the information I read says that I cannot eat Strawberries, Blueberries or any Berries of any kind. True?

3. Did anyone experience nausea or a loss (or gain) of appetite and if so, how long was it until you experienced them.

4. Do you know of a local support group in the Long Beach California area where I can visit with them?

5. Can I still do my roots for my gray hair? any hair loss and if so, how much and when did you experience it.

6. Can I still work while taking Imbruvica? I work 10 hours a day, 3 days a week.

7. I am taking holistic supplements like B17 and from my understanding it works great with getting your blood panels acceptable. Is anyone taking this on their own and what advantages are you seeing? Is anyone taking B17 while taking Imbruvica and are you having any issues?

8. When should I really take the IB? Morning, empty stomach?

9. My doctor told me I need to take Allopurinal (300mg) for 7 days prior to starting IB and continue for the first 7 days of taking IB. Did anyone else do this and if so, what issues did you have if any?

10. I have Waldenstroms macrogammaglobinemia (Bone Marrow). Anyone else have the same thing?

Lastly, I want to thank everyone who has responded (and the future ones). If I come across as a bit skittish its because I am. I want my confidence to increase before I take this. Again, thank you so much for your support.

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[TimHB]

We are all different and everyone responds to ibrutinib (or any other treatments) their own way. But having been on ibrutinib for 1 year now as part of a clinical trial, I'll respond based on my experience:

1. I had gained 25 lbs prior to treatment due to my CLL and enlarged lymph nodes and spleen, so yes, I quickly shed 20 lbs after starting ibrutinib and my nodes shrank immediately. In my case, this was a very good thing. But my weight loss was not from the ibrutinib, it was from the mitigation of CLL symptoms thanks to ibrutinib.

2. Grapefruit and Seville oranges are contraindicated with ibrutinib. I eat strawberries, blueberries and all kinds of berries every day with the approval of my clinical trial doctors.

3. I had nausea prior to starting ibrutinib as part of my overall CLL symptoms. This has improved since starting ibrutinib.

4. The CLL Society has support groups all over the country including several in Southern California. cllsociety.org/cll-specific...

5. I don't know. That's a question for your CLL specialist.

6. I haven't stopped working since starting ibrutinib. In fact, I was having trouble working prior to treatment because of the severity of my CLL symptoms. I was able to return to a full workload almost immediately after starting treatment.

7. That's a question for your CLL specialist.

8. According to the manufacturer, it doesn't matter when you take it or whether you take it on an empty or full stomach. If you're in a clinical trial like I am, they will have a strict protocol for when and how to take it. (Mine is any time of day but on an empty stomach so first thing in the morning is easiest for me.)

9. Yes, I took Allopurinol. I had no issues. It was my understanding it was to prevent possible issues caused by the ibrutinib.

10. I do not.

I, for one, am very grateful to be on ibrutinib. It isn't tolerated by everyone but I've tolerated it fairly well. It isn't without side effects and I've had them all, but my worst day on ibrutinib has been far better than my best day with CLL prior to treatment so I'm very happy to be on it.

[annmcgowan]

Hi I have been on Ibruntinib for 14 months and doing well. No weight gain or loss so far. I have put a few pounds on recently but put that down to indulgence. It can increase my appetite in the evening so I try to remember this.

I eat berries everyday. Never been told I couldn’t and no problem.

No nausea for me. I still dye my hair which has gone curly due to Ibruntinib an improvement on my very fine hair😃.

Allopurinol is normal to begin with. I am retired but many people work and travel on Ibruntinib.

I take mine at night before bed but others take theirs at varying times of the day. I think it is a ‘suck it and see’ decision. What suits one person doesn’t suit another. The main thing is you take it on an empty stomach. I wait 2 hours minimum post my evening meal.

I dont have WM and can’t help with self help group in your country. I live in the UK.

Good luck

Ann

[RJR1]

As mentioned by those above all are accurate. Three years in and virtually zero side effects other than issues with brittle nails and split skin on fingertips... oh to have the curly hair side effect.... oh just to have hair.As for weight...I gained weight after starting Imbruvica but now through diet and moderate activity I’ve lost weight and am working on getting to my target weight of 215. Freaks my oncologist out every checkup ... lol... “ you’ve lost more weight... is this planned”.

The worst thing about Imbruvica is that you can’t have Seville oranges... I absolutely hate strawberry or other jams...but love marmalade