It’s been a while since I posted here so thought I’d update.
I completed my ‘active treatment’ or the hospital stays part of my treatment depending on what it’s called.
I had full MRD Remission confirmed for a second time on my bone marrow aspiration which was good news. Unfortunately my FISH test failed so I don’t know if I have the IK1 deletion however it wouldn’t change my treatment pathway apparently.
My hair has just fallen out for a third time which really hit me hard this time as I’m not staying in hospital now and I has started to cultivate a lovely thick head of hair so I’ll be starting all over again and probably have little to no hair for Christmas which for vanity reasons I’m gutted about.
So today I officially started my 2 year maintenance period for my ALL treatment. It’s a great step forward but it’s also causing me real anxiety and worry about potential relapse and being away from my safety blanket of the hospital. Don’t get me wrong I hated staying in hospital but with daily blood tests I always knew where I was. I’m on weekly bloods atm until they finalise the dosing of my medications and then I will be on monthly bloods and quarterly IV/IT chemo treatments.
Did anyone else find the transition scary? It’s a step towards getting my life back, a very differnt life to what I had before but more control of my life at least. However it’s so scary especially now Iv lost my hair yet again I feel like I look very much like a cancer patient once again. My PICC line is still in place but due out in a few weeks time and that will be a huge change after having the thing for a year!
Oh @Tara thanks for your update and I am sorry that you have lost your hair again and I am not surprised that you are gutted. The emotional effect is not talked about enough, and I am do not feel it is vanity, it is part of us and so important.
As for your feelings of anxiety about potential relapse.
Perhaps we get institutionalised being hospitalised and we are looked after all the time and then suddenly you are out in the big wide world so all the scary thoughts and emotions can come out.
But, as you say having lost your hair you feel that you look like a cancer patient and still having your picc line in you feel like one too.
Yes, it is a step towards getting your life back, but it feels a very different life.
Really look after yourself and be very kind of yourself
I reckon everything you have said is so natural and please do keep posting
Thank you so much for your update.
It’s great to hear that you have had full MRD remission confirmed!
We are sorry to hear your FISH failed as this must be frustrating, but some reassurance by the fact it would not change your treatment pathway.
We are so sorry to hear about your hair loss and can understand that this can be upsetting and can remind you of difficult times/ going through treatment etc. It is normal to feel this way as your hair is often a big part of body image and how you see yourself. Please know that you are not alone and it’s important to be kind to yourself. We have a page that may be useful Hair loss and blood cancer | Blood Cancer UK which includes information about how to cope with hair loss, how to get a wig if this is something you would like and questions you could ask your team about hair loss. Your CNS may also have information about wig referrals in your local area if you are interested in this.
It’s understandable that you may feel a mixture of emotions as a lot happens on a treatment journey and it can take some time to adjust/ process all of this. It’s important to take time to process your emotions and be compassionate and kind towards yourself for everything you’ve been through.
When hospital treatment/ long stays end, it’s not unusual for people to find it hard to feel that they are ‘getting back to normal’ as some parts of blood cancer treatment can be quite traumatic and therefore require a healing process which can take time and a lot of mental space to do this.
It’s understandable to feel anxious, as you have said you will have been getting bloods more frequently and have the haematology team around you. But please know that they are still there and I’m sure if you needed to speak to the team about how you are feeling, they would be able to as it can be overwhelming at times. During treatment, hospital staff are there to look after you and there are often other patients around to talk to, who may be going through similar things. When finishing inpatient treatment, you may feel you don’t have the same level of support from people who understand what you’re going through and can be an isolating experience. However, by continuing to talk to your treatment team and others (such as on the forum) may help alleviate this feeling.
Hi @Tara.
I’m glad to hear that things are going well but am sorry you have had to go through it all again. All the side effects are so tough to deal with aren’t they and I completely get the vanity sides of things. Hopefully it will grow back bigger and better than last time!
When I finished treatment for lymphoma I was at my lowest. I felt lost, anxious and really scared that I wasn’t going to see my medical team as often. After speaking to others I found I wasn’t alone.
I accessed counselling at this point because I was finding things so difficult, especially worrying about relapse. It may not be for you but it’s there if you need it, along with the support line.
Please take really good care of yourself and treat yourself as much as you can. You definitely deserve it.
Sending lots of love X
Thank you. I have accessed some councilling and trying to access some other support currently to help with the transition.
I feel ok in myself mostly but my appetite is right down currently but I am putting that down to the extra medications I’m just starting. I’m not complaining as with the steroids I’m on usually I eat everything in sight and have put on so much weight so not being hungry is a novelty.
Oh @Tara I hope that you can get some other support.
Please do keep posting how you are getting on.
Don’t forget about the Blood Cancer UK support line, it is there for you on 0808 2080 888.
Look after yourself and be ever so kind to yourself
Hi Tara id love to get to chat with you as we both going through all… im.about to start my consiladition cycle 3 on monday and thats for 6 weeks … im anxious about it . So would love some info from you on how it was
Amazing im so happy for you … my consiladition cycle 3 starts monday its for 6 weeks… i was ok with the all the other treatment so far but for some reason im nervous bout this one as im doing it as an out patient… did you do the same or were you kept in for it
I did the first 4 weeks as outpatient and then the last 2 as inpatient as I was having daily chemo so made sense to be inpatient for that. The first 4 weeks were fine I handled the chemo fine. The last two weeks I was a little sick with the chemo but it wasn’t too bad. If you have been ok with the other rounds this is nothing new so you should be ok. What’s next for you? Maintenance?
Heya yes I’m on ukall14 so cycle 3 for 6 weeks then cycle 4… then it’s onto maintenance… so glad I got to talk to you as I don’t know or heard of anyone else our age going through … as its usually kids
Hi Tara i started consiladition cycke 3 last monday and was on steroids till thursday… so im starting week 2 tomorrow but today i was feeling tired and not really good… maybe its a come down from the steroids . Did you ever feel different the 3 days you were not on them
Yes I found I was fatigued and I suffered with minor nausea and bloating when coming off the steroids. It’s just a massive up and down being on them and off. Other than that how are you finding it?
Sorry about the picc line being in for the holiday period @Paulmufc.
We will be about on our forum over the holiday period if you fancy posting or even just having a moan.
Really look after yourselves @Paulmufc and @Tara
I understand that feeling only too well. I was having my second dose of chemo on Christmas Day last year and also on New Year’s Day. Certainly wasn’t what I had been planning but it has kept me alive. This all just forms part of our stories that make us, well us. Keep positive and we are all here. @Erica is there a way to private message Paul somehow I can’t see it.
Hi @Tara I will copy your question to the Blood Cancer UK support services. @BloodCancerUK-SupportTeam
I know it is not encouraged as the benefit of our forum is that we all learn from each other’s experiences and private relationships are certainly not encouraged, some people might be left vulnerable.
I understand that entirely I just wondered as Paul has the same treatment pathway and he has been struggling to find someone he might have some questions and find comfort. I have a few people Iv met through Facebook groups I chat to with the same diagnosis and I know it has been of comfort. Didn’t want to post my full name or details on here publicly so wasn’t sure if there was a way privately. Thank you
