Hello, everyone. Today's post is more in the form of despair because, frankly, that's how I feel. I'm only a few days away from starting the Obinutuzumab treatment and then O + V but I'm already in a stage of despair. Due to CCL, I have proteinuria and nephrotic syndrome, as I have already mentioned here on this wonderful forum. I'm extremely swollen all over my body and nothing I do can reduce this. Feet and legs are almost double. I've read similar cases where, despite the kidney function being like this, when you start treatment with O + Venetoclax the results are very good and the kidneys return to normal. That's what I'm hoping for, because it's already proving very difficult. I'm sorry for this outburst, but I've been relying a lot on your support and in this moment of despair I've decided to turn to all the fantastic people who usually hang around here. Even my left ear is "glued", another thing that tends to happen at CLL. The good thing is that treatment is near. 5 Days. Thank you all and sorry for venting.
Almost to the point of despair. Sorry for this. - CLL Support
Almost to the point of despair. Sorry for this.
keep your hopes up🙂. Don’t think about the negative. I know that’s easier said then done (for any of us) you will do well. I was in a very negative place for a long time because I was diagnosed with cll. I’m on treatment now and doing well. Ive had the flu for a few days now and almost over it without meds. Keep posting and let us know how you’re doing throughout your treatment journey🙏🏼🙏🏼🙏🏼.
Thank you very much for your words! I'll take your advice and report back here on the effects of the treatment. All the best!
How wonderful that you can give such great advice! I know you were in great despair when first diagnosed. I am so thrilled to see how far you have come!💕💪
You know Alice, when I see a comment like yours it makes me smile and at the same time I feel like crying. It’s bitter sweet. I don’t like to see people suffer and I try to do my best to help. Sometimes it’s hard to put it into words but I try. These posts of anxiety, depression and despair take me back to what I went through emotionally for years. ( on and off) I don’t know if all this is because I’m not being triggered by doctors and tests for a couple of months but damn does it feel good. I hope it lasts. I hope you’re well Alice and thank you.
Bruno, yes, count down the days to your treatment and try to let go of your anxiety. There is every reason to believe that your upcoming treatment will resolve your horrible symptoms. Talk to your kidneys. Let them know that help is on its way. Take long slow deep breaths with your eyes closed, letting the air out slowly. You can do this!! You and your kidneys will be celebrating before long.
Thank you very much for your message! I've usually been optimistic but right now it's despair at feeling so bloated. I'll take the advice so I can relax and think about the good things to come. Thank you so much!
do u know what’s causing the nephrotic syndrome? Have you been on medication for it?
Yes, my CCL is mainly in my kidneys. Basically, the white globules clogged up the glomeruli. I've found at least two or three cases on Healthunlocked. Fortunately, the treatment helped a lot those two persons.
I think that when u start the treatment within time you will feel much much better and you will return to your normal life. These medications work very well in getting rid of these pesky cells. So please hang in there my friend🙌🙌🙏🏼🙏🏼.
I imagine your kidney function improving depends on the cause of your current nephrotic syndrome. My creatinine dropped from over 5 mg/dL down to below 2 mg/dL during a 5-day hospitalization when I was first started on obinutuzmab after some lymph nodes that were compressing my renal arteries shrunk quickly from high-dose IV prednisolone given for a few days before the 100 mg obinutuzumab dose, followed the next day by the 900 mg obinutuzmab dose. Are you in a hospital right now?
Not yet. I will be on wednesday. My CCL was mainly in my kidneys, as the biopsy showed. Basically, the white globules clogged up the glomeruli. Cortisone hasn't helped at all. The doctor is confident that treatment with O + V will clear up the kidneys and get everything working, resolving the nephrotic syndrome.
You have definitely come to the right place. We are all here for you! The medications can work miracles! You will feel so much better. 💪
Stay strong! I can almost guarantee you will feel better after the first infusion. I felt like you, so depressed, unwell, I felt like I was dying...well, basically I was, let's be honest. Feel free to read my previous posts, I was in a very dark place when I started O+V. I was almost deaf (deaf in one ear and almost deaf in the other), my spleen was 22cm, massive, so many symptoms...I woke up the morning after the first infusion, I could hear again! It felt like a miracle. My nodes under my jaw melted away over night, they were massive! Guess what, my spleen was normal on day 10 of the treatment - can you believe it? The meds will flush out all the pesky bastard CLL cells. You won't quite believe how things will change and improve so quickly. I pray you get through the next few days and that the first infusion brings you the same relief and hope as it did to me. All the best, let's get the Obinutuzumab into your veins. It will do its job 🙏🏻🙏🏻🙏🏻stay well, we are all thinking of you. Petra ❤️
“The meds will flush out all the pesky batard cll cells”. Love that sentence Petra 🤣
Can you tell how much I hate them?😃
I couldn’t agree more Petra🙌🙌.
What a great post from Petra. I couldn't have said it better myself. Exactly the same experience for me. Just hang on BMFCDRW these are amazing drugs and they will work for you I feel sure. We are all thinking of you. Please keep us posted. Lots of luck and best wishes. Patrick
The good thing about treatment start is that with today's treatments, initial progress tends to be rapid. My ALC dropped from 300+ down to 150 in about a week, and was below 50 at I think 6 weeks. If your CLL is accumulating in your kidneys and causing other problems, hopefully clearing out most of the sludge quickly will bring rapid relief.
Good luck getting started. It's a scary place, but things do improve pretty quick in most cases. It's the last mile of the journey getting rid of remaining CLL that can be a drag.
You will be shocked how fast things turn around. My lymph nodes started shrinking before I was unhooked with my first treatment. I remember asking the nurse if that was even possible and she said that many people say the same thing. Hang on there a few more days and you will be on your way to feeling so much better. It's an amazing treatment.
BMVCDRW - First, you're way too young to have to go thru this suffering. Second - you live in one of the most wonderful countries in the world. Third - all the best for the upcoming treatments - and keep us posted - many of the rest of us will face what you are now, and are all rooting for you.
hold out for treatment - I was 11 days into treatment when my lymphs first reduced. I had a pencil thin neck instead of Jabba The Hut !!
Hang on! The “treatment calvary” is coming! All the best to you!
Sorry to hear that you have so much suffering. I hope all the good advice and kind words here will help you. Good luck with your treatment.
Can't add more to what anyone has written. Just wishing you the best and that your symptoms resolve quickly with treatment. Then you'll feel so much better physically and mentally.
Hang on tight, the O&V route can be a little bumpy at the start,
Very best wishes for a return to reasonable health.
Michael
It is amazing how fast the drugs for CLL start working. Hang in there!! Brighter days are coming.
Wow you have alot to contend with & none of this is easy!!! Please feel free to vent, if not here than where? I feel for you & its good to hear that you are close to recovery. Keep them positive thoughts flowing & allow them to overcome you so it will be great for you. I don’t know about O&V & I am treatment naive with Zanubrutinib. I am very down too with this crazy weight gain but I am grateful to be alive. I lost 92lbs naturally & I will get this new 40lbs off too before I need a hip replacement!!! Speak it into existence & you can will yourself well because thats exactly what I am doing💪🏾 Please keep us posted #GODSPEED 🙏🏾
Keep your chin up and think positive I started my treatment recently and the 1st cycle made a huge difference. It got rid of my 24/7 pain. I took the stance that on the day my treatment started it was the start of my recovery. This is helping me. I have CLL and then in Feb diagnosed with high-grade non-Hodkin lymphoma hence my treatment.
Stay positive you can do this.
That’s an excellent perspective
Wishing you the best. I think you will be surprised how quickly the cells are destroyed. Like others said may be a little bumpy but overall we are blessed with a great treatment option. I am on the downside of V & O. One month to go. I’ve having treatment for 13 months. My best, Wendy
As they say, in the end, everything will be OK. If it’s not OK, it’s not the end.
All the best to you.
I am sorry to hear that, yes this is a very difficult disease. I think we all go through these emotional and physical ups and downs to varying degrees. It’s normal and the only way through is to deal with it directly like you are doing! So congratulations on that .
Please try to take care of yourself, what are you doing for stress reduction? Do give yourself breaks from thinking about it . Ex set up times to think about it and when it’s not those times, look at the clock and say, Nope not time yet!
Our new meds are great and do work so I pray for some relief for you. Hang in there , we care about you very much!!
You poor guy! I can't see how anyone suffering as you are would not be in despair! Don't beat yourself up for that. At least it sounds like there's hope for much improvement. and it's not far ahead. Thinking about you, and wishing you well. God bless.
First of all, you have every right to feel the way you do. Step 1 is allowing yourself to feel those feelings. It sounds like you've been through hell.
I admire you for hanging tough and slogging through this mess. You are stronger than you think. You are brave. I hope you remember that.
I hope the treatment flushes those kidneys of the CLL and you can get to living the life you deserve to live. You got this and we are here for you.
Jeremy
oh that sounds awful! I didn’t realise how poorly I was from my large spleen (like poodle!) until my oxygen level shot up 6 points after first two sessions x the spleen had been compressing my left lung. It went from 93 to 99! All my other symptoms from spleen disappeared too! Bloods were back to normal after two weeks! Not sure everyone is the same but it was amazing.
I hope you have the same experience! 🤞🙏 it does wipe you out a bit for first few sessions but it’s because it does most of the shifting at the beginning! Good luck! Start drinking that water!
I've been going through this for 8 years through 5 treatments and am generally cheerful but had a moment of despair on Monday (which I will post about soon) and have had a couple of other dark moments. It happens to us all. In my case, the meds have resolved the worst of the symptoms so I'm very hopeful you find some relief. Hang in there and keep posting!
👋, I'm not in treatment yet. Just wanted you to know, I'm here, with everyone else and praying for you. We walk this road together. 🤗 . Keep us posted.
You are very brave and courageous to reach out to everyone here. Your suffering will end soon, and we are here to rejoice with you when ready. Deep breaths, and may you find relief and peace soon.
I had swollen lymph nodes and anaemia but as soon as I started treatment everything improved with very few side effects. You will feel much better once you start your treatment.
I started a different CLL but the effects were just as amazing. Rest during the first 30 days of treatment - your body will be working hard to get rid of all those deformed lymphocytes and you may be shedding a lot of fluid. Keep us posted on how it’s going.
We’ve all had times of despair.
Many of us in this forum are personally acquainted with the miracle of O&V treatment, and tolerated it well.
Wishing you a smooth ride.
I believe I commented before on one of your posts. Even though my kidney involvement is not the same as yours, treatment has improved my kidney function significantly. I was fortunate not to have too much issues with swelling. Hopefully the V&O will bring you relief, you will feel so much better and the results of obinutuzimab are pretty much immediately.
My husband was in your state but worse and as soon as he started Obinutuzumab- it was like magic - within DAYS he was walking again, not swollen and he even got his strength back to want to go golfing again. I call his O&V his Angel pills. We even have a routine every morning when he takes his Venetoclax - we do a little dance and sing Pharrell's song "Happy" I'm praying that you too find happiness within your heart, soon ❤️
That is so uplifting!
Awh so sorry you feel crappy. We all know this too well. This will pass when you start feeling better. My experience is that the V and O will give you pretty fast relief. You are a warrior and will do great. The finish line when you are in MRD will be very worth it . We are here for you.
No worries about your venting!! If you can't do it here, forget about it!! I've been on the O & V treatment since late Oct. of 2023 & all of my #s, except my Platelets , have pretty much returned to normal. I didn't have near the aches & pains or swelling that you have, but I was extremely anemic & couldn't even get rid of a simple cold - which put me in the hospital at the Mayo in Phx!! So, look forward to the adjustment period - the 1st 2 cycles may be a bit challenging & the Dr.s should be keeping an eye on your blood #s to make sure you don't suffer any major side effects, but once you're rolling, you'll be getting better!! Best of luck! keep your head up my friend!!
Hang in there, and hopefully your despair will turn into joy!!! And please don’t apologize for sharing your despair; your feelings are genuine and it is good to share them with so many who understand and are praying for you…
Hang in there you’re stronger than what you think! Sending prayers & hugs! 🙏🙏🙏🙏🤗🙏🙏🙏🙏
What a beautiful analogy- so eloquently expressed.
You’ve cheered me on as well -thank you.
Helen 🇦🇺
Thankyou for posting - I’m sorry you are going through this.
Just wanted to wish you well and trust all the beautiful, positive replies have encouraged you. (As they did me)
You’ve got this 🌅
Helen 🇦🇺
Ouch is all I can say. What my mentor said: we can't control what "luck" brings our way, only our reaction to it. Easier said if the "luck" was not so distressing. I have a therapist, I'm not afraid to say. She's a Master of Social Work. Nurses and social workers are worth their weight in gold. All I am, is just someone with chronic lymphoproliferative disease, who basically took about almost 9 months to finally get over the shock, that my health will never be the same.
All I can do is send you a hug, and that my social worker was excellent in helping me pull myself together.❤️💔❤️💔❤️ This illness we've got is both a physical and an emotional illness, and for me the psychological was worse than the physical. When the physical is like what you describe, it makes the psychological distress even harder, with reason.
thank you very much. Hope to say in the next years in this post that we are fine! Kind regards
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