Thank you for your reply, I was feeling pretty desperate when I made that post. It sounds like my partner is literally just a couple of weeks ahead of you with this maintenance chemo. Like yourself he is on a trial and there were four options randomly selected and he too was selected for what we feel was the worst option and is now back to weekly hospital visits. I suspect he is on the same treatment course as yourself. The first week he was at the hospital from 9am to 6pm, he had a reaction to one of the drugs so they had to stop and slow down the drip and give him piriton injections. The second visit was a bit quicker, and the 3rd was better again. When he was first diagnosed and had his first rounds of treatment he was only at the hospital a couple of hours max. Like you, we feel we have no quality of life. We actually live a simple lifestyle, we are not big into socialising but we do like to get out and explore and do lots of walking, we would go to the cinema most weeks, which we really miss. We had so many plans to travel, we had trips to Japan and Denmark which got cancelled due to Covid and were just looking to rebook these when he was diagnosed. For us we were so disappointed following the stem cell transplant to be told he would be undergoing another 4 rounds of chemo, and life yet again be put on hold. The explanation we were given for this current treatment was that it gives longer life expectancy, but we told the consultant that our priority was quality over quantity and for us quality has much to do with not having treatment and restrictins until it returns.
We are seeing the consultant tomorrow and we have lots of questions for them. We have never been given any information about alternative treatments or even what would happen if he decides to withraw from the trial. My partner has said he will see this course of treatment through to the end but after that he doesnt want any more.
I dont think you should have to feel lucky you are getting this treatment, this desease is robbing you of quality of life and potentially your future and bear in mind these are drug trials, so you guys are being used as the test ground for these treatments. Have you been offered any alternatives?
I hope your next weekly visit gets a bit better in terms of time scales.
Oh @Bunty I am so glad that you have posted.
I think that your feelings sound very natural to me.
Perhaps talk to your specialist nurse or medical team about your feelings and expectations.
Unfortunately I have found that my expectations often hope for medical things to happen a lot quicker than they do.
Really be kind to yourself and please do keep posting how you are.
Hi @Barkingdog thanks for your updating post.
Again your and your partners feelings sound so natural to me.
Please do let us know how you both get on tomorrow and perhaps cover your feelings, thoughts and expectations, along with all your questions.
Look after yourselves
Hi Erica
It may be different at the hospital you have had treatment at, but where my partner goes the nurses donât have time to talk. From diagnoses and through to the stem cell transplant, my partner has constantly seen different doctors so with the best will in the world they just tick the boxes they need to and move on to the next patient. We have spoke about our feelings and expectations, which is usually met with an offer to write a sick note, but we donât feel like we are actually listened to.
Oh @Barkingdog I am so sorry to hear about you and your partners experiences of the medical team not having time to give to really listen their patients.
Look after yourselves
Many thanks for your comments itâs nice to be able to discuss problems with others that have similar views and worries.
To be fair I have been seeing one of four doctors since my treatment started and the same nurses as well so I do discuss some things with them.
My consultant did say lenalidomide was the only treatment available on the nhs so I went for the trial before finding out what my treatment would be
After finding out I was told it would be every week for five weeks then fortnightly ongoing . I then found out that the isatuximab was every two weeks but still had to go in every week for my Bortezomib injection
My youngest daughter lives in Dublin and my granddaughter was born last Feb after seven ivf attempts. I was so looking forward to spending time with her and feel itâs been taken from me.
My second treatment is on Friday and have been told it will be a long day due to the side effects from the last time so I really need to get my head around it all, I feel I need to give it a go but itâs making me miserable.
Oh @Bunty I am not surprised that you are feeling miserable and feel that itâs time that has been taken from me.
You must really miss your youngest daughter who lives in Dublin and your granddaughter that was born last Feb after seven ivf attempts.
You must have been so looking forward to spending time with her
Perhaps it is video calls for a while longer, your health is the most important thing and we are here to support you.
You can say exactly how it is for you on our forum.
Look after yourself xxxx
Hi, hope you got on ok at the hospital yesterday and were able to get some answers to your concerns.
I am back at the hospital for my second treatment tomorrow as I missed last week as it was a bank holiday.
Will continue for now but having treatment every week plus going in a couple of days before for the blood test.is all consuming.
Take care and best wishes
Hi Bunty, our hospital trip was not great. We waited 2 and quarter hours to see the doctor only to be told mt partners neutrophils had dropped below 1 and they cannot continue until he is back to 1. I really do appreciate they were busy following the bank holiday, but its like mental torture waiting only to be told to go home and come back next week. There were other patients coming in after us but seeing the doctor before us, I just donât understand how their system works. Why could they not ring us and tell us this instead of making us travel to a very busy hospital and sit and wait with no explanation of why we had to wait so long. My frustration and anxiety levels just go off the scale. We live in Cornwall and its about 20 miles to the hospital, we have to allow an hour to get there because we cross a toll bridge (where there can be traffic delays) and the road to the hospital has to be the busiest road in the city. We actually spent 20 minutes in the queue for the car park.
We did get some answers to a few questions, so some progress. 1 of the consultants we saw just before he started this maintenance chemo told us he was deficient in B12, he is a vegetarian so it makes it a bit harder to get the right levels. So to compensate he has been having more dairy products. The following meeting he was given iron tablets, but without any explanation. So when we asked how his B12 levels were because of his deficiency we were told he wasnât deficient and that his levels were low but always had been, however he is iron deficient hence the iron tablets. The doctor suggested his deficiency could be partly down to how much blood they take. I was reading up about iron deficiency last night to find they suggest to cut down milk and dairy for iron deficiency! Sometimes it feels we are just going around in circles. So we are back tomorrow for him to have an endoscopy to check his stomach and see to make sure there is not any bleeding which might be the cause of the iron deficiency.
For your bloods do you have the option to do this at your GP? My partner goes to our GP the day before his hospital appointment for his bloods and thankfully our GP is a 5 minute walk from our home.
For the Isatuximab my partner picked up a chart showing the infusion rates. The first infusion was 25mls for the 1st hour, followed by 25ml increments ever 30minus, hence the first visit he was there till about 6pm. They had to stop because he was having a reaction getting a sore throat and blocked nose.
The second infusion/visit the rate was 50ml for 30mins and then increase by 100ml every 30mins, so much quicker than the first week. He was also given a injection of Piriton which made him very sleepy so he slept most of the time he was there.
The 3rd infusion was 200ml for 30mins and if no reaction continue at this rate
So it does get quicker but its still a few hours at the hospital.
I hope your treatment goes well tomorrow and is as swift as possible but I do get how it feels all consuming, there never seems to be any escape from hospital visits. We were basically told we should be grateful he is on the isatuximade, the bortezomib, lenalidomide and dexamethasane, their rational being that he is getting everything, but I donât feel any consideration is given to the patients mental health and how all these constant hospital visits become all consuming.
Wow, @Barkingdog what a day you both had, I know I would be absolutely exhausted if it were me, especially when you add travelling time as well.
I donât think it is just the practical side, it is also the emotional and as you say the toll on the patients mental healthâŚ
Also I think it is the same for the partner.
Firstly you have the support of your forum family,
Macmillan cancer offer some services Help with how youâre feeling | Macmillan Cancer Support
Also some hospitals have Macmillan services or other similar services.
Really look after yourselves, both of you and please do keep posting