UPDATE on my daughters situation.
she has now been transferred to another hospital (where she also has her chemo therapy) with a highly suspected immunotherapy toxicity… so not great news at all but we are glad, that she is in this hospital now as they have a proper oncology ward/team there. slightly scary to think that nearly a whole week has passed, where all sort of stuff has happen, which could may have been avoided if she would have been transferred earlier ! im scared now, that may certain things done may have been not the right ones, or may have made things worse for my daughter… scary times…
hello ! im desperate, to get some insight, or hear from someone who may has been/or is in a similar situation as my daughter… any response is very much appreciated !!! THANK YOU !
my daughter was diagnosed with TNBC in march this year. she is 28 years old. she also has the BRCA1 gene(and we are all in the process of being tested too) as she has a very agressive and fast growing cancer, she has been put on a weekly chemo session ( every friday). which all went really well… till her red blood cells went week. so the doctor emmidiatly reduced the chemo on to 75%- which did help. unfortunately the reduction was missed for the following two friday chemo sessions and was given at 100%. my daughter got very unwell as a result of this and it only came to light because my daughter questioned regarding the reduced dosis. so not good. she got better and finished her set of chemo sessions and was put on the RED DEVIL sessions. cancer had reduced amazingly which was such a incredible relive ! she had her first red devil session and was just on her chemo free weeks when she got unwell again. she found herself in her local A&E in hospital- which was last tuesday. since then all sort of things happening… they cant get her temperature stable. her kidneys are dehydrated, now the red blood cells are low again and she may has to have a transfusion again… but on top of this… the hospital cant even use the port my daughter has had fitted as aparently its a updated version and no one knows how to use it !!! so she is pricked all over the place… the other day they had to find a vein via ultrasound as they cant find them… i feel so helpless (we live in denmark and our daughter is back in the uk- we left 5 years ago ) the other day she started to have swollen arms, eye lids and face… they still cant figure out, what is going on. two days ago we had sepsis throwen in to the mix… but that has not been picked up again… so all rather worrying ! the main question we- as parents and her brother -are is… how will the cancer(as it is a very agressive and fast growing form) react now, as the red devil sessions have been put on hold ??? will it grow again… may even come back worse… will all her work be reduced to nothing and she has to start all over again ?! this is so very scary and worrying… has anyone been in a similar situation, where the chemo had to be stopped and has knowledge regarding what that means regarding the cancer grow…
can paused chemos make things very bad in a short time ?!
as always… any replies and shared experiances are so very much appreciated !!!
wishing you all strength , calm and determination to continue the insane journey you are on ! much love T
Hello, sounds like your daughter is having a rough time. Hopefully she will improve soon. I think a pause in chemo is fairly common. Lots of patients have side effects that need a bit of management. Epirubicin, the red one, knocked my white count out, so I had to wait a while for that to start again. The length of gap and the impact on your daughter is really a conversation with her oncology team. Every case is different but they will be keen to resolve for her swiftly. I hope they can make a plan for her to move forward soon.
Hello , im so sorry your daughter is going through this. Breast cancer treatment is hard enough with out all these additional side effects. It must be incredibly difficult for you being in another country. I don’t have any answers to your questions unfortunately. I hope they manage to find out what is going on with your daughter soon and she gets well quickly so she can start with the chemo again. Wishing you all the best x
hello @twinks77
thank you so much, for your reply and reaching out ! it is soothing to read peoples responses and it helps to know, that people are out there and take for a short moment part in someone elses situation and try to make it better …sending some kindness… it means a lot !!
and yes, you are right… it is really tough… feeling so overwhelmingly help and powerless… not able to take the slightest thing of her… NO !!! she has to go through this all herself… that is the hardest. is not that she has come off her bike(as a little girl) and you can pick her up, hold her, sooth her… mend the wound, make her comfortable… bein able to say… this will heal and next week all will be better… knowing it WILL be better… this is one insane and nasty journey she is on all on her own and that is so damn devestating… but sadly for so so many-too many !!! other people all the same…
thank you, for writing this little note and for the well wishes
returning theses well wishes and adding all the best for yourself !
T
hello @edp !
thank you so much, for reaching out and your note ! so very much appreciated !
and of course you are right… as every case is individual and different to each person, is difficult to say something really. never mind, these notes and replies always mean a lot and it astonishes me each time how powerful the bond on here is… no one does know anyone… we are all some written words… some have a photo… most not still, there is this incredible strong support, care, none questions asked response… i love that so much, nothing else matters… is simply reaching out, sharing often very peronal info and experiances with total strangers… but it never feels like this… and im so grateful to be able to share this space… you are all a wonderful support… thank you for that
wishing you strength and calm for your journey… stay strong !
T
I am sorry your daughter is going through this. I can’t answer what it all means to her cancer, but would say it’s normal to miss doses, go through dosage reductions, etc. Unfortunately it’s also the case that only the oncology day units and wards are skilled and equipped to use portacaths. I also was cannulated (with great difficulty) in A&E, despite having a port, and have also found anaesthetists don’t use them for surgery. They are of course highly valuable for their intended purpose. I hope things improve for her. I can’t imagine what it must be like not being able to get to see her easily.
I have metastatic TNBC (spread to my liver) so do understand the fear of this cancer type. There are lots more treatments for it these days, including treatments targeting the BRCA gene defects. I don’t have the gene defect but I do remain in remission from a first diagnosis in 2022.
@Coddfish hello !
i only wanted to let you know, that it was so nice, to get your note and i was about to reply properly to you but we just had an update on our daughters situation. she has been transferred to another hospital with a highly suspected immunotherapy toxicity… so if it is ok, i will reply a little bit later . please bear with me
T
You have all my sympathy as I know how hard it is to be at a distance when someone you love dearly is very ill. Always waiting for updates and constantly wondering what is happening but not liking to phone all the time in case it is an inconvenient time.
We all moan about the NHS which is so overloaded, but when people are really very ill I believe it is excellent. They will be pulling out all the stops to get the best care for your daughter. If what is currently wrong with her is a more immediate threat, they will deal with that first, and then get back to the cancer treatment. It is so very good that she responded well to treatment, and even if the higher dose unfortunately caused this problem, at least the tumour will have had a bigger hit. Some people have to try lots of different agents to get a response.
People do have breaks from chemo quite often, without affecting the final outcome. In my case six rounds of chemo had to stop at three when I broke a bone, but I still had a very good outcome (cancer free 6 years later).
So I’m sending you love and hugs to help get you through this difficult time, and some prayers for your daughter. Just respond whenever you can, we all understand.
I had wondered about that with your mention of kidneys, but you hadn’t mentioned immunotherapy. I had an acute kidney injury during my treatment with Pembrolizumab and was an emergency admission with symptoms of dehydration, I needed 9 months of treatment with steroids to return my kidney function to normal, but I did recover. I am sure your daughter will be getting the best of care.
@Coddfish hello
i start to reply to your first note you wrote to me thank you once more, for reaching out and writing, is always so comforting to read notes from people who do understand … well… regarding the port… she was for a few days on a oncology day ward… this is why we all couldnt make any sense of it, that they coudnt use it… and our daughter had all this stress with having to use her veins ! very stressful for her…
it sounds, that you have had also not the nices experiance yourself with cannula aso. this is what i find so tough to come to terms with for my daughter but also for everyone on here, where i read the posts… you all have to deal with this damn cancer beast… no matter what life you lead, what goes on in your life, what kind of person you are… cancer dosent care for any of that… but to read over and over again, that most of you ladies have all sort of other complications and curfballs throwen at you on top of all, is so tough… it makes me so helpless, frustrated but also angry… no one who deals with cancer should have to deal with more nasty complications in adition !
this is regarding your 2nd note…
yes, the immunotherapy toxicity result was only given 2 days ago and then she was transferred to another hospital, with a oncology ward, where she still is. today they want to check her kidneys via ultrasound, to see if there is a damage to the kidneys as her kidney levels are too high and not improving… and also still dehydrated.
so when i read that your kidneys were injured and took so very long to heal is crazy… and this is exactly what i mean… all this is tough enough if it would go to plan… but gosh are there complications all over the place !
thank you again, for sharing this with me, it is very much appreciated
wishing you all the best… strength and calm
T
@Eily hello there
so, so nice to hear from you and thank you, for taking the time to reach out, write and share things- i have said this a few times now but it genuinly means so much, to receive notes from people on here… it is soothing, calming, hopeful and re assuring… it is a huge help, so very comforting. i love this about this forum !!
going by what you wrote, it seems that you are in a simelar situation to be apart from a person, who is not well… so you can understand how overwhelming and difficult it is to deal with all this… its heartbraking not being able to hold her, sooth her, just support her, in whichever way needed… to make things worse she has OCD and she dose not want us to come over because she is so very worried about germs, bacteria aso- understandable… so since her diagnosis in march we have not seen her.
it was very re assuring when you wrote all the general info that often chemo has to be stopped for various reasons… so did i understand it correctly, that you are cancer free since 6 years and you are still on here to support all these people ? that is wonderful !!! and im so incredible happy, for you to have come through on the other end and hopefully find life back, embrace it… enjoy it. it must feel very, very special… i think there are no words to discribe an outcome like this
your well wishes and support are so very much appreciated- THANK YOU, Eily
may i add an update
our daughter is still in hospital. she has been transferred 2days ago, when she had a
immunotherapy toxicity diagnosis. today she has to have a ultrasound on her kidneys. they are still dehydrated and the readings are also still too high…
thank you for being there…
returning the HUG much love and many friendly greetings
T
I really hope your daughter is recovering and feeling better soon. It must be very difficult not being here to be with her. I had TNBC they tried immunotherapy once but my liver had issues from it so they stopped it, I had 8 out 12 rounds of weekly chemo then onto the EC x4. As others have said, there often is a pause or not as many rounds of chemo but honestly after my x8 rounds the tumour shrunk from 3.8cm to 1.8. I had surgery and am clear of cancer, I finish my last radiotherapy tomorrow it’s my 15th one. I think it’s good to advocate for herself and looks like mistakes were made, she’s in the best place now, please keep us updated sending you light & best wishes. Xx
HI, I do have a story but it’s very long and on going and I don’t want to set you up with a long reading time. I’m going through very difficult chemo as well with delays, targeted by 1 norse from cycle1.No tests other then blood test b4 the cycle, no appointments, no attention to blood tests. no referrals.fobbed off.
How was she able to get transferred? Who was able to facilitate the transfer?
I hope things will get better now she’s transferred. I don’t know if i can give advice other then to inform yourself, learn about the treatment as much as you can, call helplines like macmillan, keep track of blood test results to anticipate and make sure no red flags are missed. Kidney function is tested before every chemo cycle. I check my kidney function but also check creatine levels and protein levels. She cannot drinking enough water which is easy to say. I couldn’t drink after cycle1 EC.
@kitz85 hello there !
apologies, for the late response but today im taking, time to reply to outstanding mails…
thank you so much, for reaching out and sharing a part of your peronal journey- so very much appreciated
so incredible happy for you, to read, that you are clear of cancer and that(when you did wrote to me) you had your last radiotherapy the next day i only can imagine how incredible this feeling must be… to have the all clear… what a insanly huge relive it must be… how freeing… how emotional… how powerful… how wonderful, to reach this stage !!!
i think, what you did describe is simmilar to what did happen to R. i think she really didnt get on with this immunotherapy and i think the twice missed reduced( down to 75%) chemo knocked her of the track and hence the damage of her kidneys. but on a better note… being put onece more back onto steroids… this seem to be helping now and her kidney funktion has slowy improved. and her last readings are at the 82 range. and her red blood cells are better too. and we are so very grateful for this !
coming thursday she has her lumpectomy and lymp nodes removed/tested. she had already a TAG fitted… so all for a sudden things are happening now… R is just glad to get to this point and have this damn gowths removed and out of her… and she is much better , when things are actually happening…
would it be ok, to ask, how you are… and how are you feeling, as a little while did pass, since you reached out…
i hope that you are very well and in a positive and content space… take good care of yourself and i wish you well, for things ahead of you… be happy
T
hello @kellya !
thank you, for reaching out and sharing some of your experiance ! it must be very frustrating, worrying and may even scary to find yourself in a position and a scenario you right in and i feel for you…
reading through your first part of your note, it seems like less then the minimum of support and tests are done (please do correct me, if i have misunderstood this!)
but it seems, that you are a strong woman and definitely not a push over ! which i think, is often essential, to make sure things are done properly and not missed ! saying that… i think you ladies dont have much of a option… you have to take so much into your own hands, to make sure youre safe and you get the correct treatment aso.
luckely our daughter is a tough, determined one and not afraid to flagg things up, ask, aso… other people are may not in a position and as forthcoming, able to deal with all thes things… and i do feel for these ladies… hence these forums and different help options available !!
regarding your question regarding how she was able to be transferred ? i suppose you mean after she had her diagnosis ?! if you could clarify this, then i can answer- apologies for not fully understanding your question straight away
never stop being determined and to look after yourself and to what is and should happen with/to you treatment wise !!! i hope, that things will start to go better for you and less of a constant battle… stay strong
all the best…
T
Hello @templar-1310 !
You got it right , no tests and my BCN couldn’t care less. My appointment to get results post surgery she quickly left before I was seen.The only way to control the fear is by getting tests that are needed done in private. So I pay a lot for these tests but it’s worth it.
Good your daughter seems to be like me then and she has you also, how you support her is fantastic coming on forums and getting more info, you can also call Macmillan, those nurses do know a lot and can always help out with whatever they know that you don’t.
So no I am not a pushover but I’m often pperceived as dumb because of my hearing loss but I can quickly assess situations and sometimes prevent worse. I watch my blood tests like a hawk but then again oncology refuses to investigate so I’ve been trying to get transferred to a different NHS that’s why I asked regarding the transfer of your daughter how did that happen ? You wrote that at some point she was transferred to a different hospital.
She is transfered to a different care team? Did she ask to be transfered and how did it happen? I should first ask is your daughter treated under NHS or private?
Thank you for the nice words and kindness and I will remind myself of your words!!
@kellya hello you
good for you, to be fully involved and push for what you should have access to !
“knowledge is power” !!
now for people to perceive you as dumb because of your hearing loss, is rather dumb on their part ! and it is exactly as you say… you have to lern rather quick to assess situations and im sure because of this you are far more finer and deeper tuned and sense things other people dont and miss out of…
so im sure, you have a few surprises in stock for some people
our daughter has a mix of privat and NHS going on too.
so when she was diagnosed ( took 3!! attempts and the persitance of our daughter) in march this year we all discussed what the best way is to go forward and for our daughter to get help fast. so we all started to do resurch on privat options, how that would work aso. so R did see the first few times a privat specialist. but also had blood tests aso in her local hospital. when her chemo plan was worked out (that was done over the NHS but the privat doctor always was kept informed) R was advised and assured, that the treatment wouldnt be any different privat or over the NHS. also both of the privat doctors she did see also do work in the NHS sector. so the only difference would be paiments for the privat treatment. so our daughter started her chemo therapy via the NHS. so her whole journey so far is a mix of both. like discussions regardin what options for different operations are also always done via a few different consultants, doctors and surgeons.
but i will ask her, to clarefy how she was transferred and by whom, so soonest i will have a reply, then i get back to you ! but please do bare with me, as im not sure, how fast my daughter will reply
with the hospital transferr… when she fell ill (it was in the night) she did call the acute oncology number and was advised to get to her local A&E hospital. which she did. she was ther for nearly a week. but things didnt go well there and they dont have a full 24 cancer unit… so in the end(should have been sooner) she was transferred to the main hospital further away, where she also use to go for her chemo sessions. again. i would have to find out, who made that referal…
you are more than welcome… i hope it did help and clarefy a few things and hopefully made it more confusing !
please never stop to follow up on all what goes on with you… you are doing the right thing… its your body… you have all the right in the world to take care of your body, health and wellbeing !
hope to get back to you soon !
T
Hello, no problem at all I hope it helps a bit to read similar experiences. I’m so happy your daughter is doing better and on the up, that surgery should be fine and the recovery is quick. Then they will tell you if they got all of it which is when the real healing can start. Well, I was having heavy brain fog and felt dizzy so I’ve been checked over by an ENT specialist and they wanted to rule out anything else so did an MRI on my brain which was very nerve wracking to wait for the results. Everything is clear! Now I’m relieved, I found this out on Monday, I now feel I can finally move forward knowing I’ve gone through everything. I’m starting to put it behind me and enjoy being free of it all xx
hello @kitz85
so incredible happy for you, to finally also been able now, to move on from the remaining last worry- the brain fog and dizziness. what a relief that must ahve been and what a great way, to start a new week !!!
is interesting, that you did mention the brain fog thing, my daughter also pointed that out and she is pushing for having the brain and also her heart checkt, as she was told about those checks but unfortunately nothing has been arranged yet. and i think it is so very important- if possible- to resolve any worries asap. because there are more than enough worries to have to focus on…
thank you again, for your kind and ever so positive note… made me smile for you !
and what a incredible, wonderful note to share…
wishing you much happiness and inner peace from now onwards… be well
T
