Hello all Some good news . I took my last Venetoclax on Wed . My oncologist is happy that it's stable . In will always have Laeukemia his words. That goes for us all.
Back to 2 months monitoring . Unfortunately I am suffering with muscular and joint pains all over. .Have had to use a walking stick on and of last few weeks to reduce the pressure. I am hoping fatigue will improve .
Consultant has said to give it a month ...
Thank you to you all for all replys when posted This site has been been reassuring... 😊
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Stavrou1
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Stavrou, congrats on you completing treatment. Thats awesome. I think your fatigue will improve.
And with due deference to your oncologist, who I am sure knows a millions times more than me about leukemia, I dont accept his comment that we will all have leukemia forever. He cant know that.
There is a fairly large subset of people treated with fcr about fifteen years ago who are still mrd negative, meaning if they have leukemic cells, they cannot be found. The most important predictor of how people who took fcr would do long term was mrd negativity. Many of those who reached mrd negativity are still leukemia free 15 yrs out. If that’s not cured, what is?
People who first treat with V plus O these days are reaching mrd negativity faster than some on fcr, with more sophisticated tests that can look even deeper for cll cells.
We know some people treated with V plus O who got mrd negative, have relapsed. That conclusively proves that getting to mrd negative doesnt prove one still has leukemia cells that are just undetectable.
But there also many people, including members on here, who got mrd negative on V plus O who have not relapsed. Your doctor, and again I’m sure he knows more and is smarter than me, doesnt know if some people taking V plus O or V plus O plus calquence are being cured. Only time will tell.
Just about any medical website on cll you read will say cll is a treatable but incurable cancer. I cant accept that. If someone goes 10 years or more with no evidence of cancer, they are cured. My authority for that? Me. LOL. Call me naive, over optimistic or what, I don’t accept cll as incurable for all.
And to be clear, I’m okay if my cll can be just controlled and not cured. Cancer is a deadly disease and I actually feel fortunate to at least have a cancer that so far allows me a normal life. I just don’t know why doctors say its not curable when so many are fifteen years out without relapse. Heck, most of us don’t get cll until we are 60 or 70. How many years does someone have to stay undetectable at our age to be considered cured?
Actually it's considerably better than that. Patients were first treated with FCR way back around 2002, so some are into their third decade of remission ashpublications.org/blood/a...
Recently, one of the original CAR-T CLL trial patients entered his second decade of remission - another early CAR-T CLL patient sadly succumbed to COVID-19
Early ibrutinib trial participants recently also entered their second decade of CLL maintenance - though they may be reliant on the ibrutinib to keep their CLL under control.
In general, oncologists are reluctant to use the word 'cured', CLL specialists doubly so, because CLL being a chronic blood cancer, it can take a very long time for a remission to end.
Neil
If you reach 6 years remission with mutated IGHV CLL, you may never need another treatment
Due to significant side effects that increase with age and "unfitness", FCR is now only considered suitable for "fit" patients, under 65 years old. It is also only suitable for those that are mCLL and TP53/17p wildtype.
Hungary had all but given up on FCR by 2021.
January 2019 when ibrutinib became available with broadening indications (TP53 aberration in every treatment line, second line without restriction, and lately first line for IGHV unmutated patients).
Under 65 are 25% of treatable patients.
mCLL and TP53/17p wildtype are about 30%.
Based on today’s standards, only 37.5% of the patients were fit for FCR.
Overall 0.25 * 0.3 * 0.375 * 100 = 2.8%.
And then only half will be "cured" but there isn't a month goes by without a post on here, "FCR 10,11,12,13 years ago now approaching a need for further treatment."
Thank you for your kind words . Very interesting to read ,and quite uplifting . Your more clued up than me. Took me a long time to accept it , and was life changing, i became very depressed and negative . Which isn't healthy . I am now OK that it's not curable and at some point i exspect will need more treatment . I have struggled to have a normal life . But do hope that I will , I will continue to listen to my body . As I also have M.E chronic fatigue for last 30 years . Am so sure it's flared up.
We have to be strong and LIVE as well as we can. To that end, after three years of being isolated, we decided that we must start doing things again but obviously with great care. We have started our travels again and we holiday abroad again, albeit staying in Europe. We wear FFP3 masks in airports, during flights and on any public transport. We don't get up close to people in hotels, I am sure sometimes people consider us very antisocial but health is important. I still feel well, get out most days for a walk, it's just these niggling aches.
Sorry has taken me a while to reply . I have so many brain fog episodes daily, due to fatigue 😩. Totally agree we have to be stron and live with also not forgetting still have have a low immune system . Going abroad in Febuary , feel anxious about airport and flights of catching covid . And a 5 hour flight , which am not sure how my body will cope . Has been 4 years since I last saw my family . I will taking every precaution I can . If it's crowded , I stay well clear of them. Hope your niggles and aches and pain get better. Its good to get out walking as much we can . I still go walking, and with my stick when i need it. . Helps the mind . Stay safe to. 😊
Not sure if it does help but we try to book seats at the rear of the aircraft. Hopefully then we don't have people breathing over us. I have the window seat with hubby in the middle. Enjoy your holiday, stay as safe as you can.
Thank you , that's really helpful .We haven't booked flights yet , but will do this week . Really , not sure I will be up to it by than , only 3 months away.. .
Well done, really hope you stay well. I was interested in your mention of joint pains. I take Acalabrutinib and have done for over two years. Basically I have been very well but recently I have been suffering from joint pains. It's my left shoulder and elbow, my right knee mainly. It's something which was mentioned right at the start and my CNS advised me to take paracetamol if I was affected. Until recently I have been fine and the discomfort is spasmodic. Usually I am ok during the day but I am often woken up during the night with pain. I have tried taking a couple of paracetamol before retiring at night and this seems better. I have another consultation in January and will ask for advice then.Stay safe and well x
Thank you for your kind words. and i am sorry to hear you are also suffering with joints. And haven't been well recently. I can relate to your problems . My ankles and knees are particularly bad at night if I get up , going downstairs , I have to go down on my bottom , and some one at the bottom of stairs helps me up . Luckily only 10 steps . Also my right shoulder, the other night It felt like it had popped , I did several movements which helped, and settled down . I have had a xray , have gout in both my knees , swollen . Went for a 20 minute walk today but had to use my walking stick . Also have problem,s with back. Muscular . My GP as well as oncologist to wait a month and see if any changes. 🤞 . It can only get better. Have to stay positive . Wish you well and hope when you see consultant in the new year, can help you .
Hi I’ve still got until February on Ventoclax I’m also experiencing exactly the same my joints especially legs are so painfull , Constantly aching hope this helps Julie x
Thank you Julie , bless you . I will keep you all posted if things start to improve with joints , aches , muscular pains . It tires you out . . Am very hopeful now treatment Is over things will improve . You haven't long to .
Thank you so much , i hope so Suzanne. Absolutely love Bichon . My dog is cross breed , chinnese crested / Toy Poodle. When ever i was having IV infusions , I would be at hsoptial anything from 6-8 hours . My husband would say that she just stares at the door for my return. Refused to eat untill i was back home . Constantly at my side . Bless her.😊
Congratulations on your successful treatment- For your situational awareness -- when we first met my hubby's Dr,, who is a CLL Expert that is renowned internationally, he stated, "there will be a cure in his lifetime " and we haven't looked back since. Prayers are sent for you to recover from joint pain quickly.
Hi Spi3 thank you so much . It's very in encouraging to hear 😊. Hope your husband is doing well . It's hard to belive I have completed my treatment with so much going on with me. But I am very hopeful.
Yes, ty hubby is doing quite well! Last August his blood tested negative for CLL but his bone marrow tested .008 cll - it's miniscule- but the Dr wanted him to take his pills until this January so he can go into a deep and a very long remission. We are praying for UMRD. I believe that the impossible becomes possible with faith and trust and to keep looking up and give thanks. How could I not after seeing miracles upon miracles...Best of luck to you too
Congratulations, I did 12 months of O and 9 of V. Mysterious bone pain started around month 3 and continued until 11 months after treatment was stopped. I noticed them being less and less but for me they have recently come back more frequently and with brief intensity. My LY went to 1.2 on and after treatment but now are back up to 2.8 with IgM to low getting frequent UR infections.
Hopefully your pain will taper off and stay off and after the VO gets out of your system your fatigue will improve, at least mine did.
Thank you Jack . Congratulations to you aswell . I don't know if you finished recently or a while back !. Sorry to hear thou, about your bone pain. I also have it in my right leg which is my bad knee. Notice it more in bed or when am sitting down . Can be quite intense pain . Makes it difficult to sleep . I hope things improve for you . You must be fed up !. Take care😊
Upwards and onwards Stavrou1. I literally just took my last tablets after 96 weeks on 400mg Venetoclax so I'm hoping the brain fog improves. What a great drug this is with minimal side affects for most people and on the whole great results. Have a great holiday.
I also developed painful joints after O & V. It's been 1 1/2 years since finishing O & V, and I'm just starting to feel like my walking legs are back, so it's taken a while, but I hope this gives some encouragement.
Thank you for your message . I have heard it can take a year to year half . I hope you have coped with it as best you can . I hope you continue to go forward . !. So I guess am not exspect much to soon. .. I have also for many months, exspirencing , what feels like heat rising from my thighs ...last 2 weeks they feel so cold , even in bed ... take care .
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