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 itās 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 itās 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 itās making me miserable.
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Oh @Bunty I am not surprised that you are feeling miserable and feel that itās 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
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Hi @Bunty it is so true that treatment can feel and is all consuming.
Look after yourself
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 donāt 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 wasnāt 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 donāt feel any consideration is given to the patients mental health and how all these constant hospital visits become all consuming.
Hope all goes well for you tomorrow.
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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 donāt think it is just the practical side, it is also the emotional and as you say the toll on the patients mental healthā¦
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 youāre 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
Hi, Iām so sorry to hear of you experience. I wondered how everything is now?
I was diagnosed with Monoclonal gammopathy of unknown significance (MGUS) 2017, which turned into Myeloma in 2018 age 45
My initial treatment to get me into revision before transplant was VTD (vacade, thalidomide and dexamethasone) which I tolerate well but had very low iron and had some infusions.
I then had my stem cell transplant, my own cells October 2018. I had complications and was in intensive care for 2 1/2 weeks with pneumonia, colitis and sepsis(from pic line). I was out of hospital in a month though.
In February/ March 2019 I had my bone marrow biopsy which was clear, but my hematologist at the time wanted to put me on maintenance for a year. As I was a private patient, Thalidomide maintenance was available. I felt very privileged as maintenance had not been signed off by nice at this time.
It took me a year of phase return to work before going full time. I was then signed off to go away over xmas, Australiaā¦ Came back and worked three months then COVID hit.
18 months on thalidomide turned into 4+ years, 4 1/2 years remission.
My insurance premium went up to a ridiculous amount last year and I had wanted to come off thalidomide anyway so I cancelled my insurance. Luckily I could see my hematologist on his NHS service, but no longer on thalidomide.
Unfortunately July last year 2023 I was diagnosed with acute myeloid leukemia which can happen due to the high dose chemo in the transplant. Scary, long recovery but after a 2nd stem cell transplant, 60% match with my cousin Iām in remission of both cancers to date.
My life has been interrupted some what with monthly appointments but the doctors will work round if I want to go on holiday. I went to Greece this year June, not far from Athens so lots of hospitals if I get a temperature or infection.
When going away I make sure i know where hospitals are and my insurance covers me for blood cancer and neutropenia (Iām no longer neutropenic) my doctors also supply me with standard and hardcore antibiotics for the trip in case I get a mozzi bite etc.
For some reason sign off for holidays is up to the line. Last year I went to Canada before my diagnosis, my neutrophils was playing up when they had been good the year before (hence leukemia diagnosis), anyway my doctor gave me G-CSF to help and send me on my way.
I too wasnāt aware at the time of first transplant, my hematologist wanted to out me on maintenance, but it does state it in the literature they gave me.
I am in London, under Hammersmith who in terms of approach has been great, giving info ok and clerical below ok. Iāve had to do a lot of admin, chasing myself.
A bit of advise would be doctors look at the number, your hubby needs to talk, communicate everything he is feeling.
I canāt eat shellfish or smoked fish and mustard eat pasteurised cheeses. I only eat in hygiene rating 5 restaurants. I wear and have been wearing a mask on transport, busy areas and shops for 5 years and will do so for a long time.
Iām on less tablets now, steroids was a nightmare this time round. Bone ache when weening off was exhausting.
I still canāt eat shellfish or smoked fish and mustard eat pasteurised cheeses. I only eat in hygiene rating 5 restaurants. I wear and have been wearing a mask on transport, busy areas and shops for 5 years and will do so for a long time.
I hope this helps and hope you are both enjoying life. K
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Hi @Kim1 a great big welcome to our forum.
Thanks for really setting out what has happened to you since 2017.
I expect it will help others.
Wow, some story with Covid slap bang in the middle.
I am envious of your travelling.
Yes, insurance premiums can be exorbitant.
I hope you can enjoy life too.
Really look after yourself and please do keep posting
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Hi there. I was diagnosed with myeloma February 2024 High Risk Lga. I have been on 6 weekly Watch and Wait. Had blood test and whole body CT 2 weeks ago. Got called for hospital appointment yesterday. They have told me i now have fractured ribs and levels have risen so i am starting treatment. First Chemotherapy will be on 15th May 2025. They said 6 cycles of intensive chemotherapy followed by stem cell transplant. I have been looking around the site but this is my first post. I just wondered if anyone else going through it or has gone through it had any advice for me. Just to get an idea of what to expect etc. Thank you Sue
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Hi @Sue72 welcome to posting. and suddenly it sounds you are starting treatment.
I hope others will be able to share their experiences for you.
The Blood Cancer UK support line is there for you on 0808 2080 888.
Perhaps please do not underestimate the emotional and practical toll on yourself.
Look after and be very kind to yourself and keep posting.
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Thank you for the welcome and reply. Not sure if i posted it in right place.
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Hello @Sue72
I hope you donāt mind, but I have moved your post into this thread, which seems more relevant as others within it have already discussed transplant, so hopefully can support you and share their experiences.
Where you had posted was fine, but that was a busy thread and your post may have been overlooked and not had many replies.
Donāt forget our Support Line is open until 7pm on a Tuesday if feel talking to one of our team would be helpful too.
Take care, Heidi.
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Thankyou very much,i appreciate it
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So its only 3 days till my first chemo session still not sure what to expect,what to take etc. It doesnt seem real. I am just plodding along taking each day as it comes but all the while in the back of my head waiting for the start of treatment. Now its almost here and i dont know what to think or feel!!
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Oh @Sue72 the unknown is so difficult and I reckon that it is so natural that your thoughts and feelings are all over the place.
As for what to take into hospital I hope others will share their experiences.
My handy hints are clothes that are comfortable with elasticated waists, easy read books if you are a reader or Kindle person, some people take their hobbies in like knitting, crocheting, in this day and age electronic goods and chargers.
Ask your specialist nurse for their hints.
Please do keep us posted when you feel like it and I will be thinking of you, be kind to yourself
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Hello @Sue72
I hope you are feeling okay. Is it tomorrow you start your treatment?
I remembered seeing a post a while ago where someone has made some great suggestions or tips for starting chemo. It took a bit of finding, but itās this thread: FL Tips and whilst itās a different blood cancer, essentially the tips are generic for anyone having treatment and you may find it useful to read through them.
Do let the nurses know how you feel, particularly if you are anxious or afraid, they will be able to talk you through all of the drugs and Iām sure they can answer any questions you may have.
Please keep in touch and let us know how youāre doing.
Take care, Heidi
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They phoned today and said i can go tomorrow and have a chemo pre assessment so maybe i get all the info then. Seems rather last minute as chemo starts thursday so get all the info 1 day prior. Thankyou for the link and remembering about me.
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Oh @Sue72 Perhaps it might be worth you writing down all your fears, questions and practicalities if you have time.
Yes, I bet it all feels a bit last minute.
Please do let us know how you are doing when you can.
Look after and be very kind to yourself
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Hi Sue
Do you know what chemo you will be starting