Hi Everyone. This is my first post having just discovered the site which is excellent. I was diagnosed mid Nov with CLL following a routine blood test for another heart matter. Total shock as I am a 67 yr old fit man. Regular long distance cyclist who has cycled the length of the outer Hebrides, Lands End to John O Groats, Coast to Coast that sort of thing. This year I have been getting tired and had the odd night sweat but put this down to a problem I have with my heart (3 stents fitted over last 6 years). Now I know it was something completely different - CLL. Had many tests my spleen is large, I'm anaemic with haemoglobin of 75 - now 95 after a couple of transfusions and my white cells are raised. I have to wait until Feb to start treatment as I am on blood thinning drugs for my heart following last stent and Cardio man does not want me to stop until Feb. All I know from my haematology consultant is that she wants me to start Obinutuzamab and Ventetoclax. My questions are is anyone else on the same regime and if so can you tell me how you are coping with it, is it working, what side effects should I expect etc Also what is the weekly monthly routine for the cycles I understand you have. I think its 6 cycles of Obinutuzamab which I guess is 6 months and the Ventetoclax for 12 months. Not sure how many and when you have the Obinutuzamab infusions. As you can tell I am a total ignorant and just cant get hold of my consultant to ask these questions. Covid is making the communications within the NHS awful - but I guess you will all know all about that! And any help or advice would be so gratefully received. At the moment I feel utterly shocked, worried, confused and stressed out of my head. Thank you so much
New Guy Hoping for some answers!: Hi Everyone... - CLL Support
New Guy Hoping for some answers!
venclexta and gazyva website venclexta.com/previously-un...
Hi Thats really helpful, many thanks, its so good I am not alone and that there is so much support out there. Very grateful for such a swift response. Happy New Year! All best Patrick
There are a number of people who have posted about their experience, please read the pinned post "Newly Diagnosed..." at the far right to learn a lot of the terminology so it makes more sense. Then you can Search for "obinutuzumab Gazyva venetoclax venclexta" or other searches that occur to you. Welcome!
I'm just finishing a trial with Acalabrutinib+Venetoclax+Obinutuzumab after starting early last December and recently answered questions about the dosing of Venetoclax+Obinutuzumab here:
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
Venetoclax+Obinutuzumab is a very good treatment and you've managed great timing needing treatment just as it has been approved in the UK for "First line", or your first treatment. I too had a large spleen and because there is a risk of Tumour Lysis Syndrome with Venetoclax, you may need to attend hospital during the dose ramp up phase of Venetoclax for close monitoring. This precaution is because Venetoclax is so very effective at killing CLL cells that if you have a large tumour burden, the sheer amount of dying CLL cells could overwhelm your body's ability to manage the chemicals released from the dying cancer cells. In my case, the Acalabrutinib and Obinutuzumab greatly reduced my tumour burden so that I didn't need hospital observation.
Other than getting uncontrollable shakes from my first infusion, which is not unusual with Obinutuzumab, I had minimal side effects from Obinutuzumab, just some tiredness during and after the infusions, part of which can be due to the premedications, given to suppress possible infusion reactions, which can occur with any infusion. I've had some diarrhoea, probably from the Venetoclax, for which I haven't needed any medication, with the worst side effect being tiredness/fatigue. My specialist says that that will probably take a while to lift after I stop treatment. I too needed a couple of red blood cell infusions as well as an iron infusion, as my haemoglobin dropped below 80. My haemoglobin is now around 160 - the best it has been in 15 years! I achieved a complete response with incomplete recovery of my platelets and haemoglobin about 6 months into treatment - my full treatment course is 14 x 4 week cycles or just over a year, but of course the Acalabrutinib helps. I'm expecting my platelets to fully recover gradually after I stop treatment. Every other blood count is now in the normal range, except my immunoglobulins, but I've needed IgG infusions for a few years now.
Neil
Hi Neil, Thank you so much for your brilliant response. So much helpful stuff in there and when I read your profile I just thought WOW! You really have had a long and troubled road to walk, makes me feel a total wimp. I guess I am now at the start of a journey many others have and are travelling and this forum has filled me with hope in the knowledge that I am not alone and that there is all this support out there. I am so grateful to you and I wish you a very Happy New Year and hopefully we can all look forward to better days ahead. All best wishes Patrick
Hi prby2702, -
As SofiaDeo says there are lots of discussions on your questions, some in the last few days.
obinutuzumab / aka Gazyva
venetoclax / aka venclexta
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
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Each time you land on a new posting, be certain to look for the box labeled "Related Posts" to see others that share similar titles.
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In fact there are 6,589 times that Venclexta or Gazyva is mentioned in past postings- see the entire list here:
healthunlocked.com/cllsuppo...
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Len
Hi Len, Thanks so much for your really helpful reply. So much useful and encouraging stuff in the sites you recommended - I now have plenty of reading to keep me occupied! As I have said to others I am so glad to have found this site. The support from the community is amazing and I know I will be a regular if not daily visitor. Very grateful for such a swift response. All best Patrick
Hi prbs,
Three things: one, hi! Happy almost-new year!
Two: I’m on the treatment plan (V + O) that you’re going to start. Please click on my profile & read through my posts, as I describe my experiences in detail. Nothing to fear, as the updates are positive.
Three: you mention waiting to start treatment until after you’re off blood thinners? Just wondering why, exactly, as I’ve been on Eliquis for the length of treatment with no issues.
Cheers,
—Dave!
Hi Dave, many thanks for your fantastic response and links to all your updates. Cant tell you how helpful that has been for me. I was feeling really lost but now I have access to the experiences of so many others who are going through exactly what I face. What a brilliant site this is. Very grateful for such a swift response. Happy New Year and lets hope 2021 brings better health news for us all. Very best wishes Patrick
Good choice of therapy. You should do well.
I would want to be certain about the cause of the anemia as CLL has multiple ways that it can cause anemia.
You might enjoy this quiz I sent out in October to the CLL Society's support groups on causes of anemia in CLL:
MONTHLY QUIZ:
Anemia (low red blood cell [RBC] count) is a common complication in CLL. All of the following causes are directly related to CLL or its treatment except:
1: Crowding in the bone marrow by the CLL cancer cells so there is not enough room left to make red blood cells.
2: An enlarged spleen that both hoards and destroys too many red blood cells (RBC).
3: Suppression and damage of the bone marrow by chemotherapy or other drugs used to treat CLL.
4: Low levels of iron or folate or B12 limiting the raw material needed to build new RBC.
5: Destruction of the RBC by an auto-immune process (auto-immune hemolytic anemia or AIHA).
6: Direct toxic effects on the bone marrow by the CLL.
7: A rare complication where a second blood cancer called myelodysplastic syndromes or MDS develops leading to bone marrow failure.
The correct answer is #4. Although low iron, folate or B12 may be found in CLL, the disease and its treatment should not directly lead to these deficiencies. All the others are possible causes of anemia in CLL and re-enforces the importance of knowing the correct cause of the anemia, as each type is treated differently. #5, the toxic effects of the disease suppressing the marrow directly, was recently discovered.
#1 is the most common and is an indication for treatment, but #5 is not uncommon and needs to ruled out as its treatment is different. Easy to diagnose with a DAT and haptoglobin test. Make sure they have been done to rule out AIHA.
Stay strong, we are all in this together, Brian CLLSociety.org
Hi Brian, Thanks so much for your really helpful response especially all the info on anaemia and its various causes (love the idea of a quiz). I will certainly discuss the points you made with my oncologist next time I speak to her (God knows when that will be but I'm hoping we have a telephone consultation next Wed). Its so great to know there is all this support out there, such a brilliant community. Thanks for taking the trouble to come back to me and I'm Very grateful for such a swift response. All best and Happy New Year. Patrick
Hi I’m on ventetoclax to Ramp up to full strength is hard, as is the Fatigue but I have been on it for almost 4 years and seeing good results I’m 61Good luck
I did 6 months Rituximab and 1 year of Venetoclax , which is very similar to the O+V treatment. It went really well for me and I am now in remission with no sign of CLL. I am hoping for a long remission. I highly recommend the treatment.
I hope you do as well on it as I did. Good luck to you!
Hi, Oh that great to read and I am so happy and pleased it has all gone well for you. As I have said to others I was feeling so lost until I found this site. Its wonderful to hear from so many others going through the same journey and it has really encouraged me and lifted me out of a depressed hole! Someone told me the other day that it will be a tough year but to remember what Winston Churchill said in the darkest days of World War 2, "Just keep buggering on!" I think this may now be my mantra. Very grateful for such a swift response. All best Patrick
Hi,I was diagnosed with stage 4 CLL in early November, like you it was a shock. I'm 56 and experienced no real symptoms, except for a bit of weight loss, but I put that down to retiring in April to be come full time dad to my 3 yo and 1 yo. Following full bloods work up, CT , PET, bone marrow , lymph biopsy and 2 unit transfusion.. ( all done in 10 days).. I started on weekly 1000ug IV for 4 weeks and now monthly. This in conjunction with daily ibrutinab, my consultant is holding back on Ventetoclax because of my age. So far so good side affects, bloods are reasonable and heading in the right direction. I have a good relationship with my consultant with weekly zoom calls and his direct mobile if I need to call him at any time. I was actually relieved with the CLL diagnosis as when saw my set of results I thought would be more serious.... but that's my 40 years clinical chemistry experience with 7 of them working in multiple myeloma. One thing ha e learnt is that everyone has a different experience of the condition. Stay safe.
Hi great to hear from you. We are almost CLL twins in terms of diagnosis and pre treatment symptoms (apart from the fact that I am over ten years older than you - damn!!). Very good to hear how you are doing and that all is going well. I am AMAZED by your consultant, a weekly zoom and direct access by phone is incredible compared to my experience. I saw my consultant on the night I was taken into hospital for observations (Nov 11) and have had one 10 min consultation in her office at the beginning of Dec, where she spent most of the time typing on her computer and not really listening to me. I hear she is brilliant at her job (all that really matters) but totally scatty in her paperwork and communications with patients. One of her CNS nurses told me they spend ages going round picking up the pieces in her wake! But if she is clinically excellent thats all I need to know. I do have a telephone consult with her this Wednesday so with all the helpful information I have got from this site I am hoping to be able to ask much more informed questions. Hope all continues to go well for you and I send my best wishes for a Happy and healthier 2021. Very grateful for such a swift response. All best Patrick
Many thanks. BTW I think I get fantastic service from both my consultants and nurses.... but it is via the private sector not NHS.
Hi and welcome to HU; as you will have noticed from your replies, you have defo come to the right place for support and encouragement! I had 6 months of Ob ending in March (together wi Chlorambucil) and it has helped enormously. You will find your body will become progressively tolerant as cycles go by, and everyone speaks highly of Venoclax, so you seem to be in good hands. You have every reason to feel positive and we wish you well. Pls keep us posted! Cheers Handley
Hi Handley and thanks so much for your very helpful reply. I have been amazed by all the positive and uplifting support I have been given on this forum so I am so glad I dropped in! When my treatment starts in a few weeks I will let everyone know how it goes. Very grateful for such a swift response. Happy New Year and my best wishes. Patrick
Hello and welcome prbs2707! I see we have a lot in common. Here is my story. I was diagnosed with CLL in May of 2019. Extremely big shock as I had just been diagnosed with prostate cancer (Gleason 8(4+4) the month before. That of course caused a delay in the surgery I was planning to remove the prostate. At that time my hematologist told not to worry, "you will die from something else not not from this". "Do nothing, just monitor the situation with periodic blood tests." Then in June this year, after having a CAT Scan for something related to the prostate surgery I had had, we found my lymph nodes has increased in size. Now the hematologist told me I need to start treatment for CLL. He said I should be able to qualify for a clinical trial using Ibrutinib + Obinutuzumab + Venetoclax. In the process of getting accepted by the trial my cardiologist found I needed an angiogram. This resulted in havimg four stents put in (during two catheterizations). I already had one, put in 15 years prior. I did qualify for the clinical trial (fortunately on the three drug arm), but my hematologist decided better not to start until I had the stent story resolved. The stents went in in early August and September. I have been on Clopidogrel (Plavix) 50 mg/day since then. Then in late September I started on the trial. The trial is A041702 (clinicaltrials.gov/ct2/show... and allianceforclinicaltrialsin.... I had a problem with the Ibrutinib after the very first day, You can read the details of this in my first posting in this HU group. I eventually overcame that and have not had any further hiccups. The ramp-up I followed for the V, which started on day 1 of cycle 3 (cycles are of 28 days each) went from 20 mg/day up to 400 mg/day over a 5 week period. I was closely monitored during this time with 4 blood tests each week, one before taking the increased amount of V the first time, then again 6 hours later, again the next morning and finally two days later. After the initial problem I have had no more. I am feeling fine now, but the first month or so of the treatment I felt quite tired and lacking energy. I am a runner, having completed 19 marathons in the last 15 years. However I have not run during the last year, but that was due to my heart basically. I still haven't tried to return to running, but I am looking forward to spring to give it a try. Neither my hematologist, nor my cardiologist, nor the authorities of the clinical trial saw any conflict between Clopidogrel and any of the three trial drugs. I haven't had any problems with it either. It seems you are in Great Britain, I don't know if this trial is accessible there but you might want to look and see if there is something equivalent. I wish you all the best. There are a lot of good people here that can give you lots of help. Lucky you found us early on, I only learned about HU well into the second month of my treatment. I'm available for any more of my experience if you need it.
Hi and thanks so much for your brilliant reply. So much helpful stuff. Wow you have really been through it. Prostate Heart and CLL to fight. I am hugely impressed. You reply has given me a lot more confidence and many questions to put to my haematologist - when I can eventually see her again. The poor old UK NHS is really struggling . Amazing people but so busy and getting any information is a real battle. Thats why this forum has been such a Godsend for me. Take cate and good luck with everything and lets all hope for a happier and healthier 2021! Patrick
Oh, I forgot to tell you I'm 74. Regards
Hi Patrick. I haven't read all your responses yet, but want to say that I first learned of my CLL last summer. I'm 68. Mine isn't severe yet so no treatment (but two genetic markers that might mean treatment not too long from now), but I totally get the emotional reaction you have had. I have had two other cancers (bladder and prostate) - both caught early - so learning of the CLL caused a bit of a ptsd reaction. With the other cancers they were able to remove polyps, or remove my prostate, and I was done with it. But this time is different.
I just want to mention a couple of other amazing resources you should check out: cllsociety.org/ - I found a support group near me and joined. They are all on zoom now. When I learned of my cll, I immediately needed support and found a group in one city (not mine) that was about to meet. The following week I joined my local group. Fantastic people. Totally a blessing. You will see a link for support groups when you visit the site.
The other resource I just discovered: Chronic Lymphocytic Leukemia Survivors Group on facebook. It is private and I was pleased to see that people were very responsive when I asked a question or shared. facebook.com/groups/3313665... . Best wishes to you. David
PS info overload. sorry. But one more resource: patientpower.info/chronic-l...
Hi David, Thanks so much for your message. So sorry to hear you have had the cancer triple whammy! Bladder, Prostate and now CLL. That is beyond cruel but so good to see you are dealing with it so positively. Thanks for advice on support groups. I have just been in touch with one here in the UK over Christmas and they sound great so I am looking forward to developing those links in the New Year. I am due to start Obinutuzamab and Venetoclax on 11 Feb so thats something to look forward to (I think!!) I will post more updates when I start to let others know how that is progressing. In the meantime this forum gives me a wealth of knowledge and information for which I am so grateful. Thank you so much for taking the time to contact me, it is very much appreciated. Best wishes for a happier and healthier 2021
Good to hear from you. Happy New Year to you too. For sure check cllsociety.org. You will be glad that you did.
Hello, good to hear from you! I think those are a great combo! I'm on Acalabrutinib since June 2020 and will be talking to my hematologist soon about Venetoclax. Keep in touch with your progress!
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