[sabsParticipant]

Hi,

We ended up in A&E for the second time in the initial 4 cycles with stomach cramps, vomiting and nausea caused by the start of an infection and then the days that followed kidney problems due to dehydration.

My question is has anyone else suffered from constant nausea and severe stomach issues from the chemo and other drugs (i think that the steroids are causing the problems mostly). And what has helped as each week it just seems to be getting worse and worse. The only lucky thing is that this week is his last cycle (4) but im not sure that he will be able to get through it.  My other half has always been very skinny but he has lost a lot of weight and now is beginning to look very very sick, trying to get him to drink let alone eat is becoming a constant battle.

any tips would be most appreciated

[susieParticipant]

Hi sabs

Very sorry to hear of your reactions to the drugs.

All I can say if it helps, I have just completed cycle 1 of velcade, prednisolone and melphalan at my first relapse. I have found that 24 hours after the velcade I have developed the most intense heartburn/reflux I have ever experienced. This is inspite of 30mgs of a PPI. It mekes me feel very ill and lasts about 3 days. The medical team appear to take no notice of it. I also have no appetite and can’t eat anything. I have come to the conclusion the cause has to be the velcade.

You don’t say which chemo regime you are on. It is very important you take the steroid after food and preferably with milk.

I wish you all the best.

susie

[greg777Participant]

Hi Sabs,

Definitely push it with the medical team as this wasn’t my experience on a similar regime (but I guess everyone is different). They should have nutritionalists at the hospital as well – they can provide high calorie shakes to keep weight up. Keep trying all you can to get fluids in – up to 3l a day is really important especially when taking chemo.

Hoping you manage to get some progress soon,

Greg

 

[finnParticipant]

Hi Sabs

Which drugs does he take for nausea and stomach issues? I tried quite a few different drugs for nausea and (finally) I was given Ondansetron, which worked really well. For stomach issues I have always been prescribed Omeprazole, which works most of the time but not always. Susie’s advice about taking steroids with food and drinking milk/eating dairy is a very good one. Hope it all goes well this cycle

[sabsParticipant]

Hi,

apologies if there is any confusion its my other half not me that is suffering. I am not sure what the medical team are thinking they get more worried about his kidneys than what is actually causing the sever nausea  stomach cramps and vomiting to start off with.

he is on the trial Carfilzomib trial and has chemo twice a week but once a month now he has to miss a session – they once gave him an IV of anti nausea meds after his first visit to A&E but nothing since, he is on Lorazepam / Omeprazole / Domperidone / Ondansetron – none of it works I have so many boxes of all of them just nothing works, he is responding very well to the Carfilzomib itself (in the first two cycles his pp levels went from 38 down to 6) but even on his weeks off when he just takes the steroids it knocks him for six and the following day he is out for the count and cannot eat or drink, the metallic taste is there and i think 5% of it is psychological but when you have to pick him up off the floor in the A&E car-park while vomiting its a bit too much for anyone to have to deal with on either end.

I just don’t get it, at the UCLH 95%+ of the people don’t look sick, forgive me for sounding so blase about it but its like a walk-in social club people coming and going having chats over tea and eating lunches and snacks just popping in and out with no reactions to the chemo what so ever – which is actually VERY good and shows the progress on how medication has evolved over the years, but my other half just looks and sounds like a very stereotypical impression of  someone  portrayed  in the movies with cancer , sick all the time, losing weight cant get out of bed for a few days after. He bounces back but only getting (if hes lucky) 2 good days out of the week which just doesn’t seem good enough, he’s only 39 and up until March this year he was the fittest and most healthiest person I knew. He always hated taking drugs even for a headache and everything just seems to be more potent – no other side effects just the sickness :/

Ill see if the milk with the steroids works that’s something we have yet to try and 3l a day of fluid is difficult im lucky if i get 1.5

thanks for the advice

Sab’s

[finnParticipant]

Hi sabs

I am on Carfilzomib too. I had it twice a week for the first cycle but this was so toxic that it caused liver damage and we had to reduce the dosing to once a week only. This has been as effective as having it twice a week, and I do not have problems with liver enzymes anymore. I don’t get nausea from it or steroids but I do get lots of stomach issues (which I didn’t get with previous different drug combinations containing steroids). So it is possible that the side effects your husband is having are from the combination of Carfilzomib and steroids.  Would it be possible to reduce the Carfilzomib dose, or have it once a week only?

[sabsParticipant]

Hi Finn,

That made for a very interesting read, they mentioned since the second cycle that the Carfilzomib dosage that my other half is having is a VERY high dosage and maybe they should consider reducing it, (in addition to it having a god awful effect when taking the Zometa as well), but they never reduced it or never mentioned anything about just trying it for one day a week as opposed to having it twice. quite shocked at this now and wonder what on earth is going through their heads knowing and seeing what it is doing to his kidneys, i am now wondering what it is that they are specifically trying to get out of the trial (a few chosen words will be had with the Dr’s come the next monthly appointment).

I also copied your response over to my dearest who will be having words with them tomorrow when he is in – I will go to pick him up after work, but they obviously want to see him before he has his chemo based on the past weeks event, I really do sense that they are focusing on the wrong thing and ignoring some of the more basic care procedures.

Thank you

[susieParticipant]

Remember on thing sabs, trial or no trial you do have the right to say you wish to have it once a week because you feel strongly that twice weekly is too much.

Myeloma treatment is meant to be a joint enterprise between the medical team and the patient. I was on the Myeloma X1 trial when first diagnosed and found the cyclophosphamide did not agree with me at all, so they were perfectly happy to stop it.

I do find these days you have to stick up for yourself when receiving NHS treatment. They are under tremendous pressures but are usually willing to listen.

All the best

susie

[sabsParticipant]

He is now on his last chemo session today before he gets a month off, I wasn’t with him yesterday but the trial lead dr saw him – said that he has seen i happen before and it will only get worse (the effects of the chemo) and that he is worried how the 18 months of maintenance would work.

They reduced his chemo by around 30% but to be honest it didn’t make the slightest of difference to him, by the time we got home it was already hitting him just glad its the last session today and we get a month off for the most part.

thanks for the advise everyone – its good to know as for the most part you get a sense that you do anything wrong and you will be kicked off the trial knowing that its working.

Sab’s

[ethanscottParticipant]

Hey Finn, I just have a small question.

You said that you were on Carfilzomib and so am I. My question is this.

I was on a normal dosage of this drug but gradually I started getting headache on the left side of my head and I started thinking if this is a possible side effect of the drug. I just wanted to see if it is a common side effect or something that I need to go to the doctor for.

Any advice is appreciated.

Thanks!

[finnParticipant]

Hi

I did not have headache when on Carfilzomib but it is a possible side effect of any drug. How bad is it? If it is very painful, I would contact the doctor right away. Do you have any other new side effects such as swelling in the face, chest tightness? If it is mild and only comes irregularly, I am sure it is nothing to worry about but please let your doctor know at some point. All the best

 

 

[sabsParticipant]

Hi,

Just an FYI – My other half started getting really bad headaches for 48 hours at a time for the two days following his treatment (Carfizomib) but we knew this was down to the steroids (<span style=”color: #000000; font-family: arial, sans, sans-serif; font-size: 13px; white-space: pre-wrap;”>Dexamethasone) </span>as it makes him sick even on his weeks off  so we reduced the Dex from 10 to 5 tablets for a cycle (while he was on consolidation) and then the headaches started. If you’ve had a reduction on the Dex it maybe a possible cause but again everyone is different.

Its a catch 22 the Dex can make you sick but then if you reduce that the Carfib can cause you to have headaches so for us it was one or the other (he chose the nausea over the headaches as they were really bad)

[Author]

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