His Treatment Journey

On this page I will put weekly updates of his treatment and how it is going. Generally it will all be under the one date unless something unexpected happens. A tip if anyone is travelling to UCLH Macmillan Cancer Centre from outside the congestion zone, get dropped off at Grafton Way, it is a 5 minute walk literally around the corner and saves you the congestion charge being added to the fare

29/06/2022 So today was the day my husband started his treatment with his first infusion of Obinutuzumab. The day started well, got there early and was able to relax before the treatment started . I should point out that the consultant said that the way he reacted is extremely rare . He had the pre treatment of steroids and the first bag went through okay. Half way through the second bag he was just about to eat his sausage for lunch and his chest went tight and he passed out . He woke up and was shaking for 45 minutes, his blood pressure wasn’t right and he had to have oxygen. They say his body had a violent reaction to it that they haven’t seen for years. He has now been admitted and are unsure if they will continue tomorrow, keep him in another night or start next week. Many things up in the air as he is unsure what happens if he can’t continue with the treatment. He says he is running through his nine lives too quickly. At least he can still crack a joke

30/06/2022 They gave him a blood transfusion last night and tried the treatment again today. He had steroids before hand but had the same reaction with violent shaking for 30 minutes, he did not pass out this time. They have kept him in another night.

01/07/2022 He had another blood transfusion today and have said they may have to do the treatment in reverse and do the tablets Venetoclax first. The good news is that even though he only had a little of the Obinutuzumab infusion it has already started to do work. He was extremely impressed with all the NHS staff at Grafton UCLH and was looked after well in there. He came home this evening and is to rest for a few weeks.

#cll #clltreatment #Obinutuzmab #Venetoclax

20/07/2022 First lot of Venentoclax started 20mg daily. He stayed over night in Ambulatory care as he is at high risk of TSL- Tumour Lysis Syndrome. He came home late on the 21st and is shattered. The side effects he has had are some loose stools, extremely tired and is achey. We have been taking his temperature regularly as if it goes near 38 degrees he has to go back in. He has been feeling really hot but his temp has not gone above 36.7

27/07/2022 His treatment has stalled and he cannot move on to the 50mg Venentoclax this week as his neutrophils are at 0.4. He is staying on the 20mg Venentoclax and has to take some FIlgrastim and have a blood test on Friday 29th if his neutrophils have come to an acceptable level he can stop taking the Filgrastim and should be able to move onto the 50mg.

29/07/2022 He is feeling more tired than usual, still feeling really warm and his neck glands have swollen up more. His bloods were positive and his Neutrophils are up to 1.4, he has been told to stop taking the Filgrastim and they will see him on Tuesday. If the neutrophils remain stable he will be able to move up a dose. I am a little confused by this as one of the things the Venentoclax can do is to lower the neutrophils , so surely he should be having the Filgrastim to help keep them up. We will be asking about that on Tuesday.

02/08/2022 We saw the original consultant we saw at UCLH this time . Good news is that the Neutrophils are up so he can go up to the 50mg Venentoclax. We asked about having the Filgrastim and he agreed that he should be taking it every day for the next week. This made him achey so we we asked the pharmacist what he should take for pain relief and the answer was Paracetamol and if it didn’t work then codeine as well but not to take any NSAIDs like Ibuprofen . He again stayed in Ambulatory care due to his risk of TSL for one night. He is still very fatigued and gets hot easily but no temperature. His neck glands reduced slightly.

09/08/2022 We saw a new consultant today who seemed a bit all over the place. Good news due taking the Filgrastim daily his Neutrophils were up to 4.5 so he can start the 100g Venentoclax. We were told at the start that he would be in Ambulatory care one night each dose increase until he reached the maximum of 400mg. This consultant said it wasn’t the case and he would have to come back at 08:00 on Wednesday ( which he was expecting) then back at same time on Thursday for a blood test. We queried this and have been advised that in future he will have to come up first thing to have his new dose, stay all day until the blood tests have been take 6 hours later, come back the following day at 24 hours since he had the tablet for another blood test then go home. They will then call and tell him if he is to take the tablet or not. There is talk of arranging the blood tests closer to home, which will be good . He did stay in Ambulatory care for one night and had his blood test the following morning waited for the result , which were okay, took his tablet and came home. So far so good, usual fatigue and not being able to get cool, neck and shoulder glands still swollen but doing okay. He has to have an ultrasound this week to check his kidneys. He had the ultrasound and an extra blood test where it showed something on his liver function. They took him in to Ambulatory care and gave him fluids until it was time for his ultrasound.

16/08/2022 Good news today. We were shown a graph of his white blood count and how much they have gone down since the start of his treatment, there is one week where it rose again which is when he had to stay on the lower dose of Venentoclax . His Haemoglobin levels are back up, his neutrophils are on 1.7 so not great but the doctor said not too bad. He had to take a Filgrastim when he got in and depending on his blood result may have to take some more in the week. Change to what we were expecting. He is going up to 200mg Venentoclax, however he was given the tablets to take home and will take the first tablet at home then go up for his bloods 6 hours later come home then be advised over the phone if he needs to take the Filgrastim . The next day he has to go up and have a blood test then wait for a phone call to tell him if he can take his tablet. This was okay for him to continue to take the 200mg and another Filgrastim on the Saturday

23/08/2022 Today was mixed news . Everything except his Neutrophils are going in the right direction, This week they are down to 0.18 so he has been told to take Filgrastim every evening and had to have one before we left the hospital. They have also lowered the Venentoclax to 100mg again for a week and then re assess. One good thing about going down a dose is that he doesn’t need to go back until next Tuesday . He is still fatigued and getting hot sweats but no temperature

30/08/2022 Good news this week, again everything is moving in the right direction so he is going up to the Venentoclax 200mg again with daily Filgrastim injections as his Neutrophils have increased but still aren’t what they should be. The consultant explained that he will need to be stable on the 400mg Venentoclax for a few weeks before he can move to monthly appointments or even look at the infusions restarting. There was some confusion this week as the consultant said he didn’t need to see him until next week but the appointment didn’t come through. A lot of phone calls later we managed to get one booked by the secretary , frustrating and worrying but we got there in the end..

07/09/2022 Still good news, levels are going the right way and he is back on the 400mg Venentoclax and needs to continue with daily Filgrastim. He seems okay on this dose, his nodes/glands in his neck have decreased hugely and are normally back to normal.

14/09/2022 Everything still going well, remaining on the 400mg Venentoclax and is moving to Filgrastim alternate days, he has to take anti sickness meds with this dose as it makes him nauseous . His night sweats have stopped and he isn’t getting as tired when he sits and does nothing . He still gets tired if he does anything and the day after the trek to the hospital, he generally spends resting/sleeping. He is still vulnerable to infections, we discussed the COVID booster and the flu vaccination. They were undecided about the Covid one but have said he can still have the flu jab

28/09/2022 HIs neck is back to normal, he says it is scraggy! All the glands have gone down and his lymphocyte count is down to around 5. Had the flu jab, no side effects. Still on 400mg Venentoclax , the consultant said he could go to twice weekly FIlgrastim as his Neutrophils are around 5, however the consultant didn’t have the latest bloods , when they came through it was only at 2.40 so are waiting to here back if this needs to increase. He was booked in to have the Obinutuzumab infusion this week but he wants him to be more stable on the 400mg Venentoclax for a while before this is done as he had such a bad reaction to it. They are still making him a little nauseous but fatigue levels better

22/10/2022 Everything is going in the right direction for which I am so thankful . He is still on 400mg Venentoclax daily and 2 doses of Filgrastim weekly. Later this week he will be having another attempt at the Ombinutuzumab infusion. Consultant believes he won’t need to stay in as his bloods are at better levels than when it was first attempted.

28/10/2022 He had the Ombinutuzumab, it took all day as they had to increase it very slowly as he did start to have a reaction to it at certain points when it was increased so they had to slow it again. Thankfully it was a slight reaction. This knocked him out for a few days but he seems okay. Two weeks after he had a few hot flushes but is unsure if this the interchangeable weather. We are keeping a close eye on his temperature and will go straight to hospital if it goes above 37.

24/11/2023 He is still on the Venentoclax 400mg and apart from some nausea still is doing okay. Ombinutuzumab still knocks he out for a few days and he is down to one dose on Filgrastim a week. He is doing okay .

20/12/2013 Every thing is the same as last post except that they have stopped the Filgrastim, which is good news.

January 2023. His bloods are looking good and treatment is continuing as per normal for now with daily 400mg Venentoclax and monthly Ombinutuzumab which still knocks him for six. We were concerned as a few days before one of his appointments he had a bad tummy and was felling like he was before he started the Filgrastim. The doctor took a sample and we are waiting for the results with a reminder that he still has to be careful about catching anything.

February 2023. His bloods are still looking good thankfully, however the past week he has had very low energy , hot flushes and pain in the back . He did speak to his consultant who didn’t seem worried but was going to arrange a scan for him to have the same day as his Ombinutuzumab. Unfortunately he forgot to book the infusion and booked the scans for the following month. It took us running round the hospital to get his appointment for the infusion booked. It causes so much stress when this happens

March 2023 . He is still on the 400mg Venentoclax and had his last infusion of Ombinutuzumab. He is feeling very nauseous and tired but the bloods are looking okay. His scan didn’t show anything which is good news.

April 2023 He is feeling okay but still very tired with aching joints and nausea. The hot and cold flushes are back as well but I think that could also be because of the weight he has put on. He is still on the 400mg Venentoclax and bloods are still looking good. It’s such a whirlwind when you go in to see the consultant. They almost dismiss any symptoms with , well your bloods are looking good and you don’t think of extra questions until you leave.

May 2023 He is feeling a little better, still getting very tired when he does anything and is still on the 400mg Venentoclax . His CNS has been great and wrote him a letter for his employer to advise this could be going on until August and that even once the treatment has stopped he will still need to be careful about getting infections, will need to rest, take plenty of breaks and will still be tired and suffering for the effect for months to come.