To anyone who has been treated with V +O, could you answer a few questions for me as I have just started?
I am relapsed after FCR, have enlarged spleen (2-3 fold normal) ALC of 200,000, Hbg of 12.1 and platelets of 105,000 and EXTREME fatigue before starting treatment.
After test dose of 100 mg of O, I felt pretty sick. The next morning I went in for the 900 mg, but after I got out of car and took a few steps
I completely blacked out, fell, hit my head, and had a big goose egg and abrasion.
I was checked over and received the 900 mg. That night I had 2 near misses with falls as when I started to black out, I was able to grab or lean on a dresser. Although I've had not subsequent episodes I noticed my heart rate change.
My typical sleep and resting HR is around 55-60. This increased to 70-90.
My typical household chores bring it up to 75 ish. This increased to 100-110.
Snowshoeing up steep hills in deep snow typically increase it to 130-140. Now, after 2 flights of stairs I get to 125.
I was told I would feel so much better than pre-treatment within a few days. Yet it was 6 days before I felt well enough to do a short snow shoe excursion, but that all ended the next day after the 3rd Obin infusion or week 2.
My heart rate is up again, but not nearly as much as during week 1. My Hbg just before this week 2 infusion was 13.6, platelet 70,000 and ALC 2.6, a 100 fold drop.
So my questions
1. Did you ever feel dizzy, light headed after O infusions?
2. Did your heart rate take a big jump?
3. Did you feel increased fatigue/low energy that became worse after the infusions?
4. When did you actually start to feel better compared to pre-treatment?
5. Arbitrarily, do any of you wish you had gone with a BTKi like Acala or Zanu with lower AE profile after experiencing AE's with V + O.
Thx
Skipro
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1. I did feel light headed when going through the ramp up but I'm sure mine was due to very low Hb (72 at that time).
2. Heart rate went up during the first O infusion and then I would say during the next few infusions a couple of times. Sometimes I experienced it at home too but nothing that would last too long, happen too often and feel too worrying.
3. Yes. The first few infusions, the fatigue was quite bad for two days afterwards. It got better from about cycle 3 or 4, when it was just a day. SofiaDeo explained it very well in one response to one of my posts around that time, your body is working really hard with all the drugs circulating, kidneys getting rid off all the dead cells, bone marrow trying to produce new cells so no wonder we feel tired. I also had "jelly-like" legs after the first few infusions but it stopped around cycle 2-3 as well.
4. I felt better almost immediately, after the first few infusions - but don't let this fool you, I felt really crap to begin with, I had a blood transfusion on day 2 and that was amazing, going from Hb 82 up really made a difference but I had a neutropenic sepsis around day 10 and it was really hard with weekly hospitalisations for the first 2.5 months so might sound silly to say I felt better but I think you will understand? I have been posting regular updates.
5. No, not once. I wanna kill as many CLL cells as I can, I really want a decent remission out of this. Who knows, I might not get one but I am quite happy to know I will stop swallowing these jumbo pills soon - I have quite a few side effects, nothing that one could not cope with but looking forward to be "drug free", hopefully soon.
Well, I just started O & V 2 days ago. My experience so far is this. I was treatment naive and started the 100mg day before yesterday. Started at 25mg, about 1.5 hrs in experienced some heavyness in my lower legs. Weakness which I never had and I never mentioned that to the nurse staff. Back to the infuse chair I started getting chills. I blanket on, then two. Then I was starting to feel weird. Then the nurses swarmed me. Stopped the flow of Obinutuzumab for a half hour. Gave me additional benedril, then the chills subsided. Then they restarted at 15mg per hour and cranked it up from there. Still some weakness in lower legs when I went to pee. By the time they were done infusing. All was good, weakness in legs was hardly noticeable. I was woken up at 2am the next morning with hiccups that would not stop for 5 hrs. Stayed awake and headed back for the 900mg. Started of at 35mg and cranked it up from there. No leg weakness, slight water coming from tearducts here and there. More issues with hiccups, nurse wanted to give me demoral to stop them. But my Doc walked in and said she does not like giving her patients that. Later they continued and I asked. Do you guys have anything else here for hiccups??? Nothing, they ran out the remaining infusion and I went homeThe Docs office did call in a precription of Baclofen, but I have not taken it after reading possible side effects.
Today as I write this, still hiccup issues and a few chills here and there. As for the hiccups my old trick of holding my breath, taking in little sips of air and holding. Then letting all the air out and repeat is working today. Feel crummy today with low energy. Nothing else really, drinking 62 oz of water today which is quite a challenge. I am an over achiever, they say yo drink at least 56oz.
2nd full dose 1000mg Obin in one week.
Compared to what patients went through in the old days, this is a piece of cake so far for me. I chose this treatment early on as I knew it would be a good option for me. Doc agreed and off we went. I would not change course, but thats me.
After all, what other options are there? All of these treatments are strong and have side effects. Its pick your poison and hope and pray for the best. Its not like we can allow CLL/SLL run its course in our bodies. That is not exactly the best option.
I have battled urinary symptoms for years. That's the source of being found to have CLL. Infiltrated prostate is quite a bugger.Antibiotics never worked so I had always hoped treatment would.
By the way, still body flu symptoms, little dizziness and shortness of breath walking upstairs just now. I am hoping this does not go on every week.
So most of your symptoms, I find myself with. Any improvement in yours?
Mine is very large so can’t fully empty bladder. My PSA is normal and a combo of 2 prostate meds hasn’t helped.
I did stop one last week because it can drop blood pressure and I was concerned this in combo with the CRS from Obinutuzimab caused my black out and fall
I went to a clinic for what I thought was a UTI. After many rounds of strong antibiotics it was advised that I go see a Urologist.I had a PSA of 8 or so. BPH was the diagnosis. Symptoms persisted and I started to spit stones. Back to Urologist and a TURP procedure was booked. After the TURP procedure (horrible experience by the way). I had a follow up with the Urologist. Sitting in his office he walked in and said. "Good news you do not have prostate cancer, but you do have CLL/SLL.
That was confirmed by the prostate tissue sent to pathology.
Off I went to Oncology.
I have still had degrees of UTI symptoms. I chalked it up to a constantly inflamed prostate due to CLL infiltration.
There is another member here that also experienced UTI symptoms like me. Antibiotics did not work either. He said once he was treated for CLL. All his urinary symptoms resolved.
I have been waiting 5 years to see if I will benefit in the same way
Still feeling crappy and next blood draw is in the morning. Talked to a nurse today about how I feel. She said the steroids could be playing a part in that. Jittery, low blood sugar feeling, agitated etc.
Come to think about it, I hate steroids! I recall them making me feel aweful.
Thats my story as of 3/27/23 9am . Next infusion scheduled on 29th.
Re #3, I do think during induction some people really feel tired if they try to go about "life as usual", especially if that includes intense exercise.
You are killing CLL cells, metabolizing and excreting them. Your electrolytes are fluctuating as dead cell contents enter the bloodstream and energy is expended to keep them within their usual limits. Your liver and kidneys are processing more molecules than usual, and have increased energy needs, for metabolizing the drugs and excreting dead cell remains. As infiltrated bone marrow is cleared of CLL, the stem cells that have been prevented from making "normal" amounts of other cells (RBC's, platelets, neuts, etc) are able to function. So these cells are now also using more nutrients and energy. Some of the "defective" stem cells that have been producing defective lymphocytes, are undergoing repair. The viable CLL cells most likely continue to adjust their microenvironment, attempting to avoid death. These rogue cells are also attempting to monopolize the nutrients and energy resources.
So if one adds physical exercise, especially intense exercise, the skeletal muscle is preferentially pulling all the energy and nutrition sources. When we force ourselves to do physical work even though tired, we are pulling resources away from these other cells also looking for energy. Some people may have a metabolism that handles all these demands and stressors effortlessly, and go about their usual routine no problem. Others can't, we feel fatigue; our body is saying "stop doing so much" IMO. Until one is through induction and the tumor load is decreased, I think one should rest more. Better to start slowly and work your way up into things, instead of trying to jump back into normal activity, let alone hard exercise. And I also am a proponent of extra nutrition at this time, so all the building blocks are there, for making neutrophils or normal lymphocytes or providing energy to facilitate metabolism and excretion.
Monday, 5 days after 900 mg I went snowshoeing at altitude of 8000 feet for about 80 minutes sweating up a storm despite outdoor temp of 15 F
Tuesday first full 1000 mg dose
Wednesday evening snowshoeing at 8000 feet in deep snow, had to stop at 30 minutes due to fatigue and some shortness of breath
Thursday evening snowshoed at 9000 feet altitude for 100 minutes in deep snow up a lot of hills
Felt pretty good til this am. Could barely drag myself out of bed to go with realtor to see 3 homes and came home an was so exhausted I’ve just laid around all day
Was about to force myself to go snowshoeing again but just couldn’t get the energy
Bottom line. Maybe overdid it trying to not feel like a whimp and rest
Lesson learned I think
Thx
Skipro
PS at least I didn’t try to ski cuz my spleen is still sore from being 2 1/2 normal size.
Lol to skiing with enlarged spleen! I wonder if your elevated resting rates are also an indication your internal organs are working harder than normal, and would drop back down if you stop preferentially using your skeletal muscles hard. I personally think of induction as "hospitalization at home"; in the days of Only standard chemotherapeutic agents, people were often hospitalized. So I plan on reduced activity initially, see how I feel, and slowly add activities. I'll mention some of my treatments, I could do "more" easily, but in one notable case, I was pretty much stuck in bed/on the couch, I was feeling so ill. If one has kids or others they must care for, if one is still working, basic energy needs are greater and aerobic "fun" activities may be more difficult. One can always walk to maintain blood flow. There were times walking rapidly was aerobic for me, I could tone my cardiovascular system even if I couldn't ski or hike around the mountains with my water/tent/camping stuff.
What you describe sounds like an Infusion Related Reaction (IRR) to Obinutuzumb that was probably due to Cytokine Release Syndrome (CRS) plus your physical constitution. The Venetoclax can also cause reactions, such as diarrhea, which may also cause blood pressure changes.
I wish I could say that I found a paper that explains blood pressure and pulse reactions , but I cannot say that. It's way more complicated than I thought. The autonomic nervous system is a complicated attempt balance hormones, immune system, nervous system, oxygen levels, temperature, digestion, and other things I'm probably not aware of. Each of those systems has its own duration of action from milliseconds to days. They interact with each other and separately.
I'm currently in cycle 2 of a trial of 3 drugs for first line treatment of my CLL at M.D. Anderson. In the trial, I started both Obinutuzumab and Pirtobrutinib on Cycle 1 Day 1. They actually started the infusion at about 2pm, and I didn't get the Pirtobrutinib until several hours after I had my own IRR about 15 minutes after the 1/10th dose started. I've posted about it elsewhere. My IRR was Grade 3, and lasted several days in the hospital, and included diarrhea, low blood pressure, and fever. We ended up skipping the 9/10ths dose, and I also had a skin reaction on my infusion arm that resulted in the top layer of my skin peeling off with the tape that held the infusion tubes in and down. I haven't had a problem since that initial infusion, but they admitted me for the 2nd full infusion, Cycle 1 Day 8, which they split over 2 days. For the third, Cycle 1 Day 15, they did it in outpatient across 2 days. No problems. I finally did a full, single day infusion on Cycle 2 Day 1. I just started the Venetoclax ramp-up that same day.
I was already admitted at the time of the initial reaction, because my creatinine was high despite drinking a gallon or more of water each day for a month prior. I had one node (actually, a lump in my parotid gland) that was 5cm, and my WBC and ALC had been pretty high (>100K) several times before the infusion. But my WBC and ALC also dropped by 20K before treatment. So along with the high creatinine, I qualified as having bulky disease that put me at risk of TLS (Tumor Lysis Syndrome). The high creatinine is something that just cropped up in the last few months as my CLL got more serious.
So I've been looking for papers on Infusion Related Reactions on PubMed and reading more posts here. IRRs have happened with numerous other types of infusions for decades, and the idea of a combination of premeds and lower initial dose is a time-tested solution that reduces IRRs greatly, but it doesn't work for everybody. I lament the fact that I haven't found anything that approaches the problem from the individual patient condition, other than papers that say that higher WBC or ALC in blood and marrow plus maybe inflammatory conditions tend more toward reaction. But there are still people with very bulky CLL who have no or very little reaction to the first dose. So what distinguishes them? What else can be done to help us cytokine release syndrome reactors?
Pretreatment with ibrutinib reduces cytokine secretion and limits the risk of obinutuzumab-induced infusion-related reactions in patients with CLL: analysis from the iLLUMINATE study
May 2021
"In iLLUMINATE, ibrutinib or chlorambucil was given approximately 30–120 min before the first obinutuzumab infusion. Cytokines evaluated were IFNγ, IL-6, IL-8, IL-10, IL-18, MCP-1, MIP-1α, MIP-1β, and TNFα. Changes in peak cytokine levels from baseline (immediately before obinutuzumab) to post-obinutuzumab infusion were compared between arms and between patients with versus without IRRs..."
...
"IL-6 and IL-8 elevations were associated with IRRs in both treatment arms. Among patients with IRRs, those receiving ibrutinib-obinutuzumab had lower post-obinutuzumab increases in IL-6, IL-8, IL-10, and MCP-1 (P < 0.04) than patients receiving chlorambucil-obinutuzumab. For patients in the ibrutinib-treatment arm, we observed a reduction in both the rate of clinically apparent IRRs and the levels of IRR-related cytokines and chemokines.
This paper was published right about the time that the protocols for the trial I am in were being developed. But I think clinical ignorance and uncertainty is also a factor. They could have given me the Pirtobrutinib hours before the Obinutuzumab, even though Pirto is a different BTKi. Maybe they were afraid to make the leap - in case TLS was triggered, and questions might have come up afterwards as to what may have contributed. So I guess I would have needed a CRS plus TLS trial to get doctors to change course.
Most people getting Obinutuzumab get Venetoclax, I expect, and not a BTKi. But there are some that do get it with a BTKi, and maybe the patient can give the doctors a copy of the paper.
The iLLUMINATE trial tested ibrutinib plus obinutuzumab against chlorambucil plus obinutuzumab, and this CRS test was a nice side show of what else can be done besides just testing the 2 drug combos. Using some of the keywords from the above paper, I did a quick PubMed search on ((venetoclax) and (cytokine release syndrome)) as well as ((ABT-199) and (cytokine release syndrome), but didn't find anything. So it's not clear to me whether starting Venetoclax before Obinutuzumab reduces CRS. I'm also ignorant of the timing of typical use of Obinutuzumab, so someone more knowledgeable, please jump in here.
Based on the iLLUMINATE study, one might think, "Ok, do an IL6 and IL8 test first." But what if both or either is high? Do you boost the steroids? Attempt to treat the cause of the IL6 and 8? Administer an IL6 and/or IL8 inhibitor? They trialed tocilizumab with patients who had CRS due to COVID, but I don't think it did that well in that case mostly because of timing of dosing.
Efficacy and safety of tocilizumab in COVID-19 patients: a living systematic review and meta-analysis
Noveber, 2020
I couldn't find an IL8 inhibitor. I think they're still looking for a reliable one.
I have normally fairly low blood pressure - 120/80. My pulse also surges with effort or even just temperature and humidity. I can track the progress of fevers on my FitBit based on my pulse alone. COVID sent my pulse way 120 when my temperature was highest (102.7F/39.3C). My resting pulse is usually below 60. I am clinically obese, and by no means an athlete, so I wonder if the low pulse and BP are actually a sign of some disease. I think my doctors are so glad that I'm not hyPERtensive that they don't investigate further. Oh, and I also had very high monocytes (5K-20K) prior to treatment.
I agree with SofiaDeo and your wife. I know you want to get out there and not be slowed down by CLL. But it may be best to be kind to yourself and your body and accept that you need to reduce your exertion for a couple of weeks. Maybe go for walks where you don’t need snowshoes?
We all want you to be able to snowshoe again; maybe just not right now.
And eat more too, along with drinking your fluids.
ahh, you should be fine for next season! It's too bad you couldn't wait until May to start treatment, oh well, our bodies are annoying that way sometimes!
And since the oxygen saturation curve for hemoglobin re:altitude change is exponential, just look for lower altitudes to do your exercise for the nonce. Living at 7200 feet initially with this diagnosis, I would drop 1000 feet for an afternoon and get relief, I could bike/hike around at the lower altitudes much easier than where I lived, let alone going another 1000-2000 feet higher up the mountains. Mmmmm maybe look at a Steamboat Springs trip if you *must* ski again this season, my understanding is it has the lowest altitude of a major Western mountain. But I am unfamiliar with Utah resorts. Or consider doing the lower altitude runs/lifts near home. It's not as challenging if you aren't all over the resort, going to the top of the highest peaks, but skiing *something* is better than nothing. And probably *will* be aerobic. I remember my last trip before I couldn't ski a few years; we were at Beaver Creek, staying at the Ritz Carleton at 8100 feet and has an express lift just outside the hotel. I skiied mostly the smaller, lower Bachelor Gulch and Arrowhead mountains that trip, my friends went all over & to the highest peaks (11500 feet) but I definitely got a workout. I could have pushed it and gone all over with them, but I decided not to, I never pushed so hard I had to take a day off. Hahah my partner did, and had to take some rest days/afternoons. It's pretty funny when the "sick person" can ski every day but the "healthy person" overdid it and can't! So consider doing lower altitudes, stay on the blues/greens so it's not so challenging (at least avoid the bump runs) & you probably will feel fine!
2000-8000 feet in elevation. This may be the 3rd straight year I’ve missed.
I live at 4000 and drive up the canyons
Our skiing is at 8000-11,000 feet.
I was so wiped out and spleen so painful I just couldn’t put off treatment
I tried to convince my doc to start Acala last November so I could start feeling better, shrink my spleen and ski, then start the V + O in summer when it’s hot out. I figured another benefit of this would be reduced tumor burden, less risk of TLS or CRS.
She wouldn’t be convinced even though it seemed so logical to me😬
thx for your kind words and support
I do need to look at that Hbg curve at altitude. I did have this idea that working hard at altitude on skis or hikes or snowshoe would stimulate marrow to make more Hbg, but at some point I think these activities overwhelmed the system
1. Yes the worst impacts were at the beginning of treatment. I was told that a slight reaction was to be expected and was a positive sign of it working.
2. Yes it increased but not hugely.
3. Yes fatigue at the start of the treatment was a problem.
4. As the treatment progressed I felt better.
5. No, the treatment has worked thankfully and I am hoping for at least three years before I need any further treatment, perhaps longer
Hi, no to all of your questions but I am so sorry to hear about your bad reaction. I hope things will get easier for you.
I tolerated the O very well, (I'm finished /in Northern California). No problems except for the first time where I couldn't breathe and was shaking uncontrollably for a while, but that was treated quickly and thereafter O was really easy.
I am having a lot of problems with Venetoclax.
When I went from 100mg to 200mg my legs swelled to enormous proportions and although I already was in the hospital for fluid in my lungs, the doctors were unable to relate the swelling to Venetoclax. They were checking for blood clots and had me on diuretics.
...a quick check with Dr. Google confirmed that swelling could be one of the side effects.
If I take 200mg even on alternate days, i feel awful; my oncologist wants me to have quality of life and we will see if it's enough with 100mg. My problem is that the CLL makes my lungs develop liquid and only now is this under control - at least for last 4 weeks.
Let's see if 100mg of the Venetoclax [and the completed round of O] will hold off the lungs filling up again.
Since I have finished O and take only a fraction of the Venetoclx, I feel fine, maybe more tired after a focused activity, but I can live this way. I wish you all my best for a good treatment.
as a physician I do have a couple of concerns about your situation.
Fluid in the lungs can occur due to a multitude of conditions. First, has anyone checked your heart function with an echocardiogram or a stress echocardiogram? Second has anyone looked at your pulmonary artery pressure?Third has anyone drawn some fluid off your lungs and tested it for infection of from a fungus or bacteria or virus or even TB, or any cancer cells different from your CLL ?
Cardiac function, as well as kidney function or liver function can affect leg swelling. Has anyone looked at those?
Also if a person has low protein in the blood fluid will leak out of the capillaries into lungs and legs and other things. Has anyone checked into your heart, serum, protein, and albumin levels
I hope you get this sorted out and feel better soon.
My husband also experiences edema in his feet and ankles with venetoclax. He is all done with infusions and is beginning cycle 8 with a reduced dosage of Venetoclax, down to 3 pills/day, due to neutropenia, from four pills/day. His blood work is all good at this point. He has been on diuretics for this issue since he began treatment, and guessing he is just one of the "lucky" ones that is affected in this way. He hasn't had any lung or cardiac issues. Just looking forward to the light at the end of the tunnel, and praying it isn't a train 😀. Don't underestimate the power of these drugs... everyone is unique.
Thanks, glad to hear he can tolerate at least 3.! I am at 100mg and will probably stay there - as long as the fluid does not come back. If I take 200mg of V, I feel just awful, nauseous and dizzy and my oncologist rightly said that the quality of life is also important! I work with international startups on their investor pitch and I have to feel good to do a good job and to have fun. So we will see if I can get by with 100mg per day.
thanks so much for your concern. Yes to alll your questions, when my lungs were drained several times , they analyzed the fluid and there were clearly CLL cells present
Im in the care of an excellent pulmonologist who talks to my oncologist all the time.
And, now that the fluid has gone totally these past weeks and my legs are normal ( and I’m on only 100mg of Venetoclax) I’m a lot better.
But when I was in the hospital and they were draining the lungs they did all kinds of cardio tests that I passed as well The swelling was really a side effect of the venetoclax
I’m having a colonoscopy soon and they will do an endoscopy as well. I really appreciate your comments and will forward them to my oncologist / hematologist and see what she says.
Hi Skipro I just started on V&O but was treatment naive. Looked at your Q's and here are my answers:
So my questions
1. Did you ever feel dizzy, light headed after O infusions?
Yep, particularly with the first 100mg and up to third infusion last Friday. Quite unsteady on my feet but didn't black out. Sorry to hear you suffered t his.
2. Did your heart rate take a big jump?
Oh boy did it. The night after the infusions I cannot sleep as my resting HR is in the 90's! And I can escalate to 110 -130 quite quickly so am careful. Two days later falls back but only to about 76. Haven't felt much like exercising except walking and housework so very jealous of show shoeing!
No-one warned me about the HR so I found it quite frightening
3. Did you feel increased fatigue/low energy that became worse after the infusions?
Yes. Particularly after the first two. I was kept in hospital for 5 days after the first cos of bloods but all resolved. My oxygen levels were not great either but that has now resolved. Fatigue is in the small print for O.
4. When did you actually start to feel better compared to pre-treatment?
Today actually. This morning woke up feeling calm and bright. A bit of a first fo rme, My fitbit has blown up so just took my RHR for you and it is back down to 73. Oxygen 98%. I am happy.
5. Arbitrarily, do any of you wish you had gone with a BTKi like Acala or Zanu with lower AE profile after experiencing AE's with V + O.
Not sure I have a view on this at present. Maybe will revisit later if I have more AE's.
No I have only been on the BTKI Therapy & exercising too strenous in the first 2 weeks almost took me out of here. I would like to throw my cautionary tale in the mix as well, slow down & let the medication work. It was a horrible experience & I am still recovering. The Pleurisy was untreated & led to Left Pleural Effusion, Pneumonia vs Atelectasis. It was still under treated evidently based on abnormal CT Scan & PFT which led to Pulmonary Edema. So still presently on just 1/4 of the recommended dosage with good results. I have resumed moderate exercise but still dealing with body aches & fatigue. I just know had I’ve been more patient then things would not have been so rough & ugly. My CLL Specialist at RWJBH just wants her 2nd opinion Pulmonologist & Cardiologist to clear me before we take any advance steps & I agree. Go easy & let the medication do its job. And yes I believe it is denial because we do know better! A great question was asked of me, how would you advise your patient? always think along those lines because the answer is easy then🤷🏽♀️ #GODSPEED🙌🏾
My Homegym will be there when I am ready so don’t rush it instead have that anticipation
First infusion I ran a temperature of 38C (100F) for the whole 8 hours and the rate had to be halved. I have no idea what my pulse was as I was totally out of it except for knowing the IV would take until after midnight. Didn't sleep that night, every time a nurse came to take BP, temp etc at 2am, 4am and 6am blood test I was awake.
Day 2 infusion no problem at all. I was awake for 2am BP but had to be roused for 4am. Awake for 6am blood test.
I have had problems sleeping for 2 nights after all IV's. I think it's the steroids.
After some IV's I have had a pulse less than 60.
As you can see from the recorded stats for day 1 cycle 2 I was pretty much fine. No one in the UK is ever recorded as having completed a normal rate IV. The "on completion" line is not filled in as the lead pharmacist can't count and has presented one "nth rate change" line too many and not provided space for pulse, SpO2 or RR. That and finding out that not only can nurses not count but can't read, then they wonder why I'm jumpy. (I have CLL not FL!)
If I had started a month later and doctors had been on the ball it might have been V+I but that wasn't approved when I started. V+I also delays reaching full dose of V by 7 weeks. It would have saved 10 days, 7 nights in hospital and about 20 blood tests. But I have yet to find out how I tolerate BTKi drugs.
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Out there at high altitude pushing yourself after an infusion. ANIMAL! Thought I was an achiever. 
Finished 1 year V&O
V & O combination therapy
