Anyone with experience of Tecentriq ? ( atezolizumab)

Hi Margaret,

I hope you are well.

My Dad started the Atezolizumab immunotherapy on Wednesday. Yesterday evening, Dad mentioned he had what felt like internal pain on both sides of his stomach. He was up all night with pain in and surrounding his stomach. The pain is making him feel like it is hard to breathe. This morning the pain is more so over the front of his stomach as opposed to the sides and he says it is hurts if you touch it. Has anybody else had any experiences like this? 

Thanks,

Danielle x

hi Danielle. I have had no bad effects from treatment(5 now)  but was giving emergency number to phone if issues and my oncologist has gave me loads of warnings   think you need advice from cancer nurse or .  emergency number if you were giving one  if no number ring ward. hope things improve.

Hi Danielle

Since starting my treatment of Atezolizumab my main issues has been abdominal pain, not so bad at beginning of treatment but as greatly increased over time, I have had 7 so far and last couple of months suffering from abdominal cramping pains which flare up on a off all day and in between during the day  leaves me with a sore dull achy/ bruised feeling, also alternate between constipation and diarrhoea, also loads of gas gurgling away in my stomach 

I was warned to look out for any of these symptoms as it can cause inflammation of the bowel so would give the 24/7 helpline a call, I’ve called a few times and was told to keep an eye on temperature and if diarrhoea increases and start feeling unwell, I have mentioned it to my oncologist and she ordered a ct scan but this time to include the pelvis so they can have a look at the lower bowel as abdomen scan only picks up certain bowel areas, back in clinic next Tuesday so hopefully will have some answers if results are back

I was told if the bowel is inflamed then treatment will be delayed while they treat it

I do feel for your dad as I know first hand having abdominal pain constantly every day does get u down

Let us know how things go and hope he soon improves and always feel free to get in touch 

Love Margaret 

Hi Margaret,

Dad called for an ambulance this morning as he couldn't move and breathing was becoming increasingly difficult. The paramedics came out and tapped on his stomach (I think that was rather painful) and they said it sounded very dull. They took Dad to the hospital and ran some blood tests and said his white blood cells are elevated showing signs of infection. They did an x-ray on his abdomen and chest and have ruled out ascites but they are still unsure as to what the infection is. They are going to run some further tests checking for gallstones etc.

Danielle

Hi Danielle

Your dad is in the right place to find out what’s causing the infection, it’s always important never to ignore symptoms especially with the treatment we are on as it’s so new and even the doctors are still learning about this one

Let me know how things go and hopefully he will soon be on the mend

Love Margaret 

I will apologise for my negativity in advance but I am so incredibly frustrated, angry and upset right now. My Dad was sent to the surgical decision ward on Friday so they could decide what to do next as they were still unsure as to what was causing his severe abdominal pain. He was barely able to keep his eyes open at this point, his breathing was shallow  and he was in pain. The doctors then decided they needed to do a CT scan to get a clearer picture of what was going on. They set Dad up in a ward to wait for his CT scan and told him that we must continue to not eat ahead of the scan. After several hours of waiting, they moved Dad to another ward and advised he would need to stay the night, still with no idea when he would have the CT scan. Several more hours passed with no sign of any doctors or a CT scan. By this point, it was late in the evening which we all knew he would not have the scan until Saturday now. Dad asked the nurse if he could have something to eat (he has been in the hospital since the morning and had not eaten anything all day). The nurse went away and was talking, laughing and joking with the other nurses for about an hour before coming back to say the doctors said he was not allowed to eat because he may have a scan soon. I don’t believe she had asked anyone in honesty. Dad asked the nurse to ask them again as he was very hungry and was conscious he hadn’t eaten since lunch time the previous day. The nurse said she would but said they will still say no anyway. Dad eventually gave up and went to sleep while listening to the nurses talking very loudly and joking around. This morning he was again told he must not eat or drink ahead of the scan. At 4pm today, still no sign of any doctors/CT scan. My mum kept asking one of the nurses what was going on to be told she was repeatedly calling the imaging department and they had told her they were still waiting for a doctor. At this point, Dad had not eaten  for 48hours, had not been offered anyway water and was given nothing for his pain. He was again falling asleep and had not one person come to check on him. To top it all off, when he woke up on Saturday morning the nurses had taken his medication that my mum had brought for him (prescribed by his oncologist) because they were not in a sealed bottle! They said they had ordered him some more because they have to be in a sealed bottle with his name on even though most come in strips in a box with his name on. They had also taken his liquid morphine that was in a bottle with his name on. Instead of taking his medication at 9am like he normally does, he received one of his tablets at 13:30 and I’m not sure he ever received the rest. How can it possibly be OK to leave someone in extreme pain without any food, water or his own medication for 48hrs?!?! Just after 4pm, Dad checked himself out of the hospital (with my mum). My mum told the nurse how this was utterly ridiculous that he had not been allowed to eat and left for all this time when he has terminal 4 cancer and they were still no closer to getting the CT scan. The nurses response was “oh you have terminal 4 cancer, you might as well go home then”. Absolutely unbelievable!! I am so very angry right now and my poor Dad... well I don’t even have the words... 

o dee that is terrible the worst I have heard from a hospital. no wonder you are full of thunder. made me wait 10 hrs I thought that was a killer. 

The whole thing is a really bad joke! How can people be treated this way... Dad is now back at home, he has had some dinner, taken his medication and is getting some sleep. He is still in a significant amount of pain but my Mum is trying to make him as comfortable as possible to get through until Monday when hopefully they will call his oncologist/specialist nurse and get something done or at least be able to speak to someone that gives a damn! Hopefully...

No doubt the hospital would have let my Dad lay there until Monday still without any food or water. It’s absolutely heartbreaking. 

To add to my fury, the nurse said that my Mum and Dad should have contacted somebody that knew about ‘this sort of thing’, you know like Macmillan. My mum explained that because of his shallow breathing and extreme pain to the point my Dad couldn’t move, he would have still ended up at the hospital hence why they thought calling an ambulance was the best port of call. The nurse replied with yes but then they would have been able to tell the hospital what to do or advise what the issue could be because they are specialists. What are the hospitals actually for in that case?! Basically, the outcome of the story is that nobody was able to help and all the hospital did was make it worse by not allowing him to eat or drink and taking away his medication. Hopefully Monday brings better news

Hi Danielle 

To say I am shocked at what’s happened to your dad is an understatement by far, please don’t let them get away with this deplorable and uncaring behaviour it needs addressing not just for your dad but for any other patients who may be receiving this kind of attitude 

I would be on the phone first thing in morning ask to speak to the ward leader and insist on a meeting with the appropriate persons and make them aware you are filling an official complaint against the hospital, don’t let them fob you off by them telling you to go through pals as it won’t get you anywhere. On Monday ring your dads oncologist secretary and ask for the oncologist to ring you and explain to him what has happened, if you feel up to it write everything down from the time he was admitted to when he came home

I have learned since my diagnosis that you have to grow a tough skin and don’t be afraid to speak your mind and not tolerate anything your not comfortable with

I really hope your dads oncologist will step up on Monday and order the ct scan immediately for him and get some answers of why he was treated like this

Please let us know what transpires from this awful episode 

Love Margaret 

Hi

I've just seen your post via the community posts and I am disgusted by his treatment. Why don't you contact the NHS PALS https://www.google.co.uk/url?sa=t&source=web&rct=j&url=https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/what-is-pals-patient-advice-and-liaison-service/&ved=2ahUKEwi6i_m40KfeAhVCXMAKHWkgDU0QFjAAegQIBhAB&usg=AOvVaw1t1yxcREYGlrGKlCGRUaTz&cshid=1540678207255

Alison xxx