Ibrutinib and fatigue

[lartington]

can anybody comment on how long they suffered from fatigue whilst on Ibrutinib?? my husband started this on September 15th developed shingles and it was topeed for 10 days, now on a reduced dose of two tablets per day but is extremely tired. he says he feels 'physically depressed" he behaves that way, walks around hanging onto the furniture, no energy at all. Back for more bloods on Monday....

[Cllcanada Top Poster CURE Hero]

I'm not on Imbruvica (ibrutinib) so have no experience, but excessive tiredness and weaknesses are a listed side effect...

Bring this up with the doctor on Monday.

Imbruvica (ibrutinib) information

nlm.nih.gov/medlineplus/dru...

[Mikey47]

Hi Lartington, I have been on Ibrutinib for 13 months and have not suffered from tiredness/fatigue.

Does your husband have the 17p deletion? Is he on Ibrutinib on compassionate grounds?

It is, though, early days if your husband has only been on it for a few weeks. It may be more to do with a low Haemoglobin level.

Let us know how his blood results are. Ask for a printout of the results.

[lartington in reply to Mikey47]

thankyou for your reply, yes he does have p17 deletion and he is 74, prone to skin cancers and chest infections, has haemaphyllus influenza for which he has nebulised antibiotics. he is on a named patient status. hw

[fish61 in reply to Mikey47]

hey mikey 47 fish 61 here, haven't heard from you in a while.

still on 3 tabs of Ibrutinib a day.... rbc 4.07 ....wbc 5.7 .... hemoglobin 13.8 ... still tired but i find that a light to moderate exercise every day helps.. plus I am 76 . how are you doing ? fish 61

[Mikey47 in reply to fish61]

Hi Fish, Sounds like you're doing well, long may it continue.

I'm doing well also. My next appointment is on 23rd (2 monthly now) and then December.

Apart from my platelets and immunoglobulins, all other counts are normal. I know that many things can affect platelets and among them are ginger and garlic which I use regularly.

I am back in the gym since around May this year and I've been busy living. I find there's too much to respond to on the forum at times. I was away in September for a week and came back to 83 e-mails!!! I don't think I ever caught up

My next CT scan in December and I'm due a Bone Marrow Biopsy, though I didn't have the last one.

I did try and substitute MRI scans for CT scans but the trial team wouldn't have it. My hospital took charge of a new 'first in the world' Toshiba (low dose) scanner which I'm pleased about.

All in all, the only thing I'm slightly concerned about is my GFR (Glomerular Filtration Rate) (rate of fluid filtration in kidneys) which put me at stage 2 chronic kidney disease, (should be around 90+) I have to bring that up next Thursday.

All the best to you, Fish

Mike

[fish61 in reply to Mikey47]

mikey 47,

Glad to hear you are doing good on the Ibrutinib.... I have not figured what all the blood marks are yet but I know the important ones and I am within small fractions of having normal readings.

Dr Wierda says on a scale of 1 to10 ....I am a 1 ...10 being on the wrong side of the grass.

Since I live in Houston I have become friendly (as i want to be) with many at MD Anderson . and while I wouldn't let any of them suture a cut ..they know their oncology.

I see that there is soon to be a clinical trial on Gayzava and ibrutinib soon ... Gaz has proven to be superior but with many more side effects.

I asked Dr Wierda why we are not combining the new highly tauted ABT-199 and was told that just yesterday he had started to work on it.

I then asked him do i get part of the commissions ......he never answered !

Yesterday I saw my Pulmanary guy and he said come back in a year, I go on every 2 months with Ibrutinib in Nov. So I am beginning to feel pretty good mentally.

I still have fatigue and I believe it as a result of the IBrutinib not enough exercise as I have a hip and both knees that should be replaced some very cold day in hell .

Anything you can send me on ABT-199 I would appreciate as I am finding from others we just do not get the knowledge we would like... fish 61

[shazie]

I have been on Imbru since April of 2014. So far, I haven't had any issues with Fatigue but many problems with my stomach. According to my hematologist, at his practice, fatigue is the number one problem reported with Imbru. I am not sure, in this case, if age has to do anything with fatigue but I am 56 years old and I am very active and I walk 4-5 days in a week for 3-4 miles each time. I think, fresh air and outdoor help me a lot. I also like to juice if my stomach allows me. I juice all organic carrots, apples and yellow or red beets together. I found out this combination does magic for energy boost. I also take two supplements daily, one is called METHYL B12 (5000mcg from Country life) and BLOOD BUILDER (from Megafood). You can order them online from Amazon or other places. But, please consult with your physician before taking any supplements. Just to let you know, I did call the makers of Imbru and one of the pharmacies that distribute Imbru in US and they both assured me that there is no interaction between any of these supplements and Imbru. Again, please ask your physician before deciding. Good luck with everything.

[Mikey47]

Hi again Lartington,

I have just been reading your previous posts and I see your husband has more than his fair share of co-morbidities. Ibrutinib, however, has been shown to be equally effective with 17p- patients.

Sometimes it takes a longer time before an improvement is seen. It was a year before my blood results returned to normal (with the exception of platelets and Immunoglobulins). In my case it was the heavy tumour burden of lymph in my abdomen, chest and on my spine, (which is characteristic of the 11q-) which was initially feared to be high grade lymphoma but thankfully turned out not to be.

I'm sure, with time, you will see an improvement in your husband's situation.

[linkthecat]

I started Imbruvica on June 27, 2014 and the fatigue lasted right at 6 weeks and then lifted. I feel absolutely great and full of energy now.

[Psmithuk]

I haven't any major CLL problems - yet -but after I had shingles (post diagnosis) I was absolutely floored, and it took me all year to get back to any sort of activity - I stayed away from work all this time and retired at the end of it because I couldn't cope with going back. It was a question of doing something small, then spending the rest of the day recovering.

ChrisC

[lartington]

hi, just a brief update...... my husband is feeling very low, lethargic and weary----- shingles for the second time in 6 weeks, Ibrutinib ongoing. hw

[PaulaS Volunteer in reply to lartington]

O dear... shingles yet again... I am so sorry to hear that... It must be hard to keep positive and help him keep his spirits up... Have the doctors suggested anti-depressants? Maybe just to tide him over for a while? (Apologies if you've already discussed that in earlier posts, and I missed it).

Wishing you both some happier days...

Paula

[lartington in reply to PaulaS]

thankyou for your kind words, the suggestion has been made that my husband see a psychologist at the hospital this coming week, for a bit of an uplifting chat.......... we have just cancelled a holiday, and will stay close to base camp. such a pity, we were going to stay near our daughter who has just moved house and is going to have breast reconstruction beginning of December following breast cancer earlier this year.

I must say how much I appreciate this contact with 'like-minded people' I hate discussing medical concerns with friends who are all getting on with retirement, golf, holidays, whatever.

[PaulaS Volunteer in reply to lartington]

Hi again, Lartington.

It was good to hear that someone's suggested your husband has a chat with a psychologist this week. I hope that works out in practice, and he finds it helpful. Anything that lifts our spirits, can only be a good thing... And of course it's great if that happens without needing anti-depressant medicines.

I've just been looking through some of your old posts, to get a bit of background of his situation, and can see that he's had a lot of very tough complications on his health journey. It's not surprising he feels so tired and fed up with it all. Having to cancel your holiday is very disappointing too... and the stress of your daughter's cancer and surgery must be adding to it all...

I do hope his shingles improves soon, so he doesn't have to be admitted to hospital again.

Am I right that you live in the Leeds area, or were going to move there? I'm in Sheffield - not so far away. Yorkshire is a great part of the world...

thinking of you,

Paula

[lartington in reply to PaulaS]

Hi Paula, We live near York. We moved here a year ago to be nearer Bexley Wing at St.James Leeds where my husband's Guru Prof Hillmen has been caring for him for 8 years. We used to travel a long way from Teesdale every 28 days for ivig, stay in an hotel overnight and drive home the next day. We decided we were too old to continue to do that, Peter Hillmen suggested my husband (also Peter) could have his ivig at Harrogate General hospital, but still see him at Leeds when needed. Harrogate Sir Robert Ogden Unit is simply superb. the staff are truly angels, so very caring and kind. we currently go there twice a week for bloods for Ibrutinib and now shingles checking.He is very low in spirits I think due to extreme fatigue from shingles. However, we are going to try a new regime tomorrow and he is going to go to bed for two hours each afternoon for a complete rest, see if that helps him get through the remaining day. He has had so many awful problems to deal with during the last 8 years, I don;t know what keeps him going. One year he had surgery for perianal abscesses four times, due to low immunity, skin cancer surgery more times than I can count, thromboendectorectomy surgery at Papworth for huge clots in his lungs which resulted from dvt in his legs over a period of years. it goes on and on. Not forgetting four collapsed vertebrae. Life has been good to us, we have had a wonderful time, married 50 years next year, we have travelled and lived in many parts of the globe, we are blessed with a delightful daughter AND we live in God's own country (haha) Yorkshire. best wishes hw

[PaulaS Volunteer in reply to lartington]

Hi hw,

It's great that your husband Peter is under the care of Prof Peter Hillman - everyone speaks well of that guy. My husband is also called Peter - good name, isn't it?

It must have been a tremendous upheaval for you both, to move across the country so you could be nearer better medical care. But with something as complicated as CLL, I can well understand it.

With all that long list of nasty health problems that your Peter's been through these last few years, I'm not surprised it's taken its toll and he feels low. I was interested that you say he's going to try going to bed for a couple of hours every afternoon, to help him through the rest of the day. If my experience is anything to go by, he will find that extremely helpful.

I'm usually fine in mornings, but by the afternoon, I'm not up to much. A deep tiredness hits me, and my brain goes into deep decline. If I push myself to struggle on, then evenings are a complete washout for me. But when I sleep in the afternoons, I can usually function again in the evenings (and can be quite lively in the early hours of the morning - like now! ), It took me a long time to get to the point of accepting that routine though, because having to sleep every afternoon is very inconvenient - it messes up one's life a lot.. But now it's become an essential coping strategy for me (to sleep at that time). Problem is that my hospital clinic appointments are always in afternoons, so I have to stay awake for them. I'm pretty brainless when I'm there... I don't take things in very well, and can't respond intelligently to things the doctors say.

Anyway, I'll be interested to hear if afternoon sleeps help your Peter.

I hope he's beginning to pick up a bit now, from his shingles. I think maybe shingles itself can cause low mood - it certainly does seem to drag people down. My otherwise healthy sister had it last winter, and she felt knocked out for weeks - both physically and mentally (so unlike her).

After all you've been through, it's great that you can say life's been good to you, and you'll celebrate 50 years of wedded life, next year. Congratulations in advance, for that... You say you've lived in many parts of the globe.. Interesting... where actually have you been? I've also done a lot of travelling earlier in my life, but when we settled back in England, I thought I never wanted to leave these shores any more. You are right - we are blessed to have our families (our first grandchild was born a few weeks ago), AND to live in God's own country of Yorkshire.

Best wishes,

Paula

[lartington in reply to PaulaS]

Hi Paula, thankyou for your reply, apologies for the late reply.shingles nearly over, but a cluster of lumps were discovered in a haematology investigation two weeks ago, and scans , biopsy later my husband needs a neck dissection - removal of all lymph glands at the right side of his neck, they are malignant, still feeling grotty from shingles, ibrutinib and the prognosis of such major surgery hardly cheers one especially on a dull November day. hope you enjoy your grandchild best wishes Hazel W

[PaulaS Volunteer in reply to lartington]

Dear Hazel,

I was so sorry to hear about your husband's new problem. That must be so VERY hard... He has been through so much already... and you with him, of course...

You talked about his low mood earlier... with a string of problems over the years - the most recent being shingles and fatigue. And now this new surgery coming up... Certainly not something to cheer the heart on a dull November day...

I saw your other post, that said his surgery is due on Dec 11th, and that he's been told to stop Ibrutinib for some days before and afterwards. (I've just gone to the link Cllcanada mentioned, and it says the same there "Consider the benefit-risk of withholding IMBRUVICA® for at least 3 to 7 days pre- and post-surgery depending upon the type of surgery and the risk of bleeding."

So, I assume Peter's doctors reckon that the risk of bleeding is greater than the risk of stopping Ibrutinib for a couple of weeks. If you're unsure about that, I'm sure they wouldn't mind you discussing it with them. I believe the medical setup there in Leeds, is one of the best. I'm sure the surgeons have discussed things with Prof Hillmen...

Anyway, I can only say that I'm thinking and praying for you, wishing all the best for you both, as you face this next hurdle.. November wasn't entirely dull and grey here in Sheffield today - there are some lovely autumn colours still around. May you and your Peter also find some unexpected golden moments these days, to lift your hearts...

Do let us know how things go...

Paula

[lartington in reply to PaulaS]

Hi Paula, it is a while since I have been near the internet........ my husband will be admitted at 7am tomorrow for surgery to remove all lymphnodes in the r.h. side of his neck, 'dissection' together with removal of a cluster of squarmous cell carsinoma cysts, and investigate a thrombosis in his jugular vein. he will be in intensive care for a couple of days. but in a week he will be able to return to Ibrutinib............

Our only daughter on the other hand has just had breast re-construction following breast cancer, she was quite poorly, due to a reaction to anaesthetic and again in intenstive care for four days, she is now bouncing ....... and hoping to draw a line under all that stuff........ hope you are feeling good, and wish you a happy Christmas hw

[PaulaS Volunteer in reply to lartington]

Hi HW, thank you so much for updating us. Your family certainly have an awful lot on your plate at the moment. The surgery your husband is facing tomorrow sounds very complicated. I'm sure you'll be glad when the next few days are behind you..

At least your daughter is now "bouncing", after her ordeal.

Wishing him (and you) all the best.. for the surgery and the time to follow. Let us know how he gets on,

Paula

[Cllcanada Top Poster CURE Hero in reply to lartington]

He should be on prophylactic antivirals... unbelieveable if he isn't.

Shingles antivirals do not prevent reactivations... but they can limit

the outbreak and reduce post herpatic neuralgia...

~chris

[lartington]

thankyou for your reply, he was on prophylactic antiviral Zovirax which has now been increased to 5 per day, if no improvement by Wed next he will have to be admitted to hospital for intravenous type.

[leopardo]

Don't know where you are in terms of husband and daughter. And ! am very sorry that your family has gone through all of this. I do hope there has been some improvement, some good news! Noticing that almost all of these posts are at least 4 years old. Not good. Am suffering from severe fatigue and dizziness. Getting worse. Apart from the CLL, first diagnosed 17 years ago! ) and what I've just mentioned, I am in relatively good physical condition exercising almost daily, eating not badly and sleeping relatively well. I am 76 years old. Have been on Ibrutinib for the last 5 years and it has brought all significant blood levels into normal or almost normal range. Have tried going-off ibrutinib for a month recently but did it not seem to make much difference in terms of the fatigue. As as the fatigue and and the dizziness are getting worse and worse, I am beginning to wonder if the Ibrutinib is still not the primary cause. Have done additional blood testing as well, have seen a psychiatrist. All negative results, no clinical depression. I am an enigma? Or am I?

Leopardo, Canada