Side Effects of Chemo

Relapsed or refractory lymphoma
#1

Good Morning Everyone,

My BF had Nodular Sclerosis Lymphoma 13 years ago. It has recently come back (well, they think it’s the same kind, but not 100% sure). Anyhow, he’s started treatement this past Tuesday (1/26). First treatement was Bendamustine. Then he went back on Wednesday (1/27) for a combination of Brentuximab Vedotin & Bendamustine. He felt “OK” after the Tuesday treatment… and then he felt “OK” (just tired after the Wednesday treatment…until… UNTIL about 24 hours after treatment. Around 3:30pm Thursday he showered, but seems right after that shower he started getting sick… and sick, and more sick. Which is about 24 hours after his 2nd treatement.

Anyone out there taking the Bendamustine and Brentuximab treatments? If so, can you let me know how it is going for you? I’m told that the treatments he’s on are ‘predicable’… meaning… once you go thru one Tues/Wed treatement… youll know what the next treatment is going to be like… so, next time, we will know that around 24 hours after his treatment he’s going to be sicker than a dog.

I read some posts where people are going to work, living their daily lives, doing the same things, but maybe just a little ‘less’ of them… well, my BF is down and out. He’s not moved other than to go to the bathroom. He’s very sick. He says he has ringing in the ears, heaviness in his limbs, he says it feels like his body is ‘buzzing’. He is having a hard time keeping any food down… he’s thrown up bile-- nasty green bile… I’m trying to force him to drink water, but… he’s afraid to drink water. He also said he has a headache.

The doctor has him on two different anti-nausea meds… one to take, and the other one to take IF the first one doesn’t work… and then he’s on the meds to keep him from getting shingles… Anyone have horrible side effects from the anti-nausea meds and/or the anti-shingles meds?

it’s hard to tell what is making himt he sickest… and now he’s afraid to take the anti-nausea meds.

I have never had the chicken pox… should I go get a chicken pox vaccine?

I’m sorry there are so many questions in this post… I just don’t know if the amount of ‘sick’ he’s experiencing is normal. I was told these two chemo’s were tolerable… and you could still do things… but… from what I’ve seen that’s not the case.

Thanks,
Angie

#2

Hi Angie

I’m sorry I’ve only just seen your post!!

I’m sorry to hear how badly your BF has been feeling. I’m having Bendamustine and Retuximab every 4wks over a Tuesday and wed. By Thursday evening I feel dreadful. I’m not sick but it hits me like a stone and lasts several days. If I don’t take my sickness medication I’m sure I would be sick as I am nauseous and can retch easily. By the Sunday I’m starting to feel a little better but to be honest I feel rubbish for 7-10 days. I know it’s not the same treatment as your BF but it may help to know that feeling crap is not unusual.

I am due to have my 6th treatment on the 23/24th Feb (hopefully my last!).

After my 2nd treatment I felt really bad and they changed my nausea meds which really helped. What also helps is to keep drinking even though you don’t want to, it also helps to flush your kidneys. I get an awful taste in my mouth and nothing tastes nice. But, eating does help, especially spicy foods. His headache is probably due to dehydration. If you contact the docs/haematology dept and explain about the sickness I’m sure they can help. I have had 4 different sickness meds and as I said, I’m not actually sick now.

I can’t imagine going to work. Even when I’m feeling ‘better’, I tire easily. They give me 3 nights worth of Lorazepam which really helps me sleep through the worst of it. I take it Thursday/Friday/Sat nights. I’m also taking Septrin and Acyclovir daily.

Having said all that the treatments have passed really quickly. I can’t believe I only have 1 more to go.

I can’t answer your question about chicken pox. I should ask the the haem nurses/docs. They are really helpful and will advise you but also try their hardest to make the side effects more tolerable.

Good luck to both of you and I hope your BF Has a better experience after his 2nd treatment. Do get him to talk to the staff before his next treatment. There is so much they can do nowadays. T x

#3

Well, we had quite a scare. He went in for his 2nd treatment of cycle 2… and about 6 hours afterwards he started feeling pretty crappy. We went to bed and woke up to fever, shivering, chills, (like he was convulsing type chills)… I went to work for only 1 hour adn 15 minutes, then left to come back home to take him to his 2nd treatment (knowing he was probably too sick for it), but… we went. When we got there, they checked vitals… which were horribly low. BP was 86 over 52 and his Oxygen was 90% heart rate was 119… and he had terrible head/eye pressure, and flushing of the face. They took him via EMS to a hospital… they gave him double dosages of antibiotics (just incase his new port was the sorce of infection), benedryl, and sterioids… he had a head to toe rash develop… and even now it’s still there. Then they took him in another EMS ride to downtown hopsital (where is onco is)… They admitted him for 1 day waiting the blood labs… if it was infection they were going to keep him. Come to find out it was an allergic reaction to the chemo… so the chemo that WAS working… (we seen a before and after x ray of the chest tumor)… he might not be able to have again. They do the pre-meds also… but apparently it didn’t help with cycle 2.

He has Lorazepam too for Nausea when the Zofran doesn’t work… he is also taking the meds to prevent shingles (Cyclovair?) something like that. They also have him on Prilosec for the acid reflux, as he had a TOUGH time with puking after round 1… But if it weren’t for this reaction he had… he would be ‘sailing’ thru cycle two… they aren’t going to give him the day 2 of cycle 2 now… and now they might change it.

He receives Brentuximab Vedotin & Bendamustine on Tues, then Just the Bendamustine on Wed… so now I feel like we are behind… who knows what this will do. I wanted him in remission for the ASCT… Still crossing my fingers…

Cancer sucks!

TY for your response. I appreciate it!
Angie

#4

The severity of these effects depends on the type of drug being used, the patient’s overall physical condition and overall response to the medication. I witnessed Fatigue with Nausea and Constipation

#5

Well, no more bendamustine… he was severly allergic to it… we finished his regimine without it… they did a PET and the cancer wasn’t gone so they hit him with 1 dose of ETOPOSIDE right before his ASCT… they never did another PET after the one dose of ETOPOSIDE… so… who knows if he was cancer free before going into his stem cell transplant (May 2016)… his new birthday is May 11th… things were going pretty smooth afterwards. He went back to work 4 months after his stem cell transplant. We were golfing, having fun, laughing again… then 11/1/16 his follow-up scan was CLEAR… MORE GOOD NEWS!.. So, we had a great Christmas… and onto ski season. He was able to get out on the slopes January 20th and 21st, but that’s when things started to change. He started the cough… we had a chest xtray January 23rd… they said clear… must be allergies or maybe just some post transplant/chemo irritation to the lungs. The prescribed some Steriods to help calm the lungs… didn’t work. Went back to his pulmonologist…Higher steroids… didn’t work… So, finally… someone took him seriously when he was saying… “Look, I can’t breathe very well” So, he had a CT Scan that showed two lobes in his right lung were collapsed… so then a couple days later he was to have a bronchoscopy (March 20th) where they found he had tumors in his lungs that were completely blocking his upper right lobe and middle right lobe airways… Good news, his breathing should improve with the tumors gone… the lungs should re-inflate on their own… BAD NEWS… it’s Lymphoma for the 3rd time… (or did it even ever go away)? But… now it’s in his lung and it’s very angry and ticked off. They removed 3 tumors and no where near ‘got it all’, so… there is more!

So, he had a clear CT Scan 11/1/16 and a clear Chest CT on 1/23/17… and now he has lots of tumors in his right lung on 3/20/17… Well, this was a big bummer, and we also learned that he cannot go thru another stem cell transplant. The bendamustine really messed his lungs up and he received a paralyzed diaphram from one of the medical procedure… could of been the biopsy or the pleurodisis or who knows, but his body would not tolerate the high dosge chemo. he’s had his life time limit of radiation from the first time he had cancer and he’s got allergies to bendamustine that prevent him from having any of that… so, our option is limited to OPDIVO…

Anyone have any experience with this newly approved Immunotherapy drug that the FDA Just approved for Classical Hodgkin’s Lymphoma?

the first time around the doctors told him he had Nodular Sclerosis Hodgkin’s Lymphoma… second time they first noted the same, but later noted it to be Nodular Lymphocyte Predominate Hogdkin’s Lymphoma… and this time around they are saying it’s the ‘same thing’ and call it Classical Hodgkin’s Lymphoma… i’m not sure they had the medical expertise 14 years ago to test his first sample… they have better testsing methods now. They do indicate that his is a difficult case because he’s presenting characteristics of B Cell Lymphoma and Classical… so, who knows what he actually has, but… the doctor said this new OPDIVO could work for him…

Kicker is… it’s not a cure, but more of a ‘time buyer’. His onco told him he would need to get an IV infusion every two weeks for the rest of his life… On top of all of this, he feels like complete crap… he coughs so much he pukes… almost all his food comes back up… his abdomen hurts, his head hurts, he’s now vomiting small amounts of blood, he’s tired, lathargic, has quit working, He recently developed a lump on his neck… that could be the immunotherapy drug working, or it could be the cancer saying “you aren’t killing me yet”… so, we don’t know. I guess we wont know for awhile… they (according to the Opdivo website) will give him a scan at/around 9 weeks… and see if he has changes… meanwhile he’s MISERABLE. He just had is 1st treatment of OPDIVO on March 30th, 2016, and his next one will be on April 13th…

The FDA did an excellerated approval because it supposed to shrink tumors… but there are no studies that show it extends life… if it does though… what’s the quality of it?

We are frustrated…

He only made it 8 months after his ASCT before it came back and it came back pissed off :frowning:

Anyone using OPDIVO and care to share ?