Living with the Fear of Relapse

Good morning everyone.
I am 61 years old ,diagnosed with AML on April 27th this year.After quite a rocky start and then three rounds of chemo (AML 18 Trial ) in September my treatment finished and I have achieved complete remission.
I am feeling great,back to gentle running (my passion) and even back in work on a phased return
I actually count myself as very lucky that despite getting this awful disease I have got this far relatively unscathed.
The question I ask is how everyone deals with the fear of relapse that at the moment is quite active in my brain !
Mark.

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Hi Mark, great question, my situation is very different and I was diagnosed in 2003 with CLL and I have been a very lucky girl to have been on watch and wait ever since. However even now when I have a medical appointment due that fear and anxiety comes straight back and I get a yukky feeling in my stomach. When I was diagnosed my fear, anxiety, emotions and thoughts were on high alert for a very, very long time. I think what I am trying to say is to not beat yourself up, so much has happened to you physically and emotionally since the end of April this year I would say, without medical training, that it will take a long time for you to heal physically and emotionally. My advice would be keep on gentle running, doing things you enjoy and treating yourself occasionally. So I do not think there is an answer, just a process which takes time. Oh, and keep posting

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Hi Mark, when I was initially diagnosed I was introduced to the concept of Mindfulness by one of the clinical nurses and also given some cds to help with relaxation, as we can carry a lot of tension in our bodies. It’s really understandable to be worried about relapsing/our disease progressing, but I know I’ve found mindfulness helpful to keep me focused on the here and now rather than getting caught up in anxieties about what might happen further down the line. I know my anxieties build up around appointment times, and this approach can help me.
I don’t know if that is helpful at all? But I think it’s really understandable to feel like that, especially when you’ve been through such a lot. Take care.

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Thanks Joanna and Erica for your honest replies.
This week has been quite difficult emotionally as my mum was admitted into hospital quite poorly. She is 95 years old and also a cancer survivor, breast cancer 49 years ago !! Thankfully shes much better now and back to her tough old self and talking about coming home !
Because of this and returning back to work, also in my local hospital a lot of memories kept popping up and the fear of relapse started to get stronger.
On Friday I decided to stay away from the hospital and my mind settled down and by yesterday I was feeling great again,ran the parkrun met some amazing people had a lovely day !!
Just taking one day at a time ,this morning is a beautiful day and I intend to enjoy every minute of it something I thought would never happen a few months ago.
Mark

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Hi everyone, I had 3 rounds of chemo followed by a transplant in December 2015 to treat AML. I class myself as extremely fortunate to have got through the whole thing with relatively minor issues although they felt dreadful at the time! I try and live life to the full but I cannot shake off the little grey cloud, that is fear of relapse, that follows me everywhere I go. Most of the time I win the race and manage to keep it on the other side of an imaginary mountain but some days it catches right up with me and gives me a proper soaking :cloud_with_rain::cloud_with_rain::cloud_with_rain::worried::cry: All I can say is try and keep the distance, there will always be rainy days but just remember life is good, let the sunshine through :sunny::sunny::sunny:

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Hi Mark, I am glad your mum is starting to feel better. Very interesting how you local hospital brought the memories flooding back, I am sure I would have been the same as the memories come flooding back for me as soon as a medical appointment is due. I also think going back to work really took a toll on me emotionally, mentally and physically. Your park running certainly is your release, mine is the gym either on equipment or Pilates or Zumba. Music helps me so much. Yes, today has been a beautiful day as the autumn leaves continue to fall in the sunshine. Please let us know how going back to work goes.

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Hi Lisa, you say you had your transplant in December 2015, I find anniversaries bring those fears whizzing back to me. As I said to Mark above today was a beautiful day as the autumn leaves continue to fall in the sunshine. I like your idea of an imaginary mountain I think you might be like me and see everything very visually in your mind. Perhaps I have to have rainy days, the ducks love them by the way, to appreciate and enjoy the sunny ones and yes, sorry ducks, there are more sunny days than rainy days now, aren’t I a lucky girl. Have you got any side effects from the transplant?

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Hi Erica, I don’t have any GVHD symptoms or serious side effects, I escaped relatively unscathed although I do still suffer with fatigue but my consultant says that it isn’t likely to be linked to my transplant at this stage…?..My side effects are more emotional …I try to stay positive but my check up is coming up on Wednesday and I can feel the anxiety building. The anniversary of the transplant is not a problem for me, in fact it’s the opposite, the last two years I have gone for a meal to celebrate with my family and I will be doing the same this year.

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Hi Lisa, let us know how your check up goes on Wednesday and you make sure you enjoy your celebratory meal in December.

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What a lovely idea @Lisa to go for a meal with your family to celebrate your transplant anniversary - was this your idea?

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I think we all just wanted to acknowledge how lucky I was, it seemed natural to celebrate and to toast my donor :sparkling_heart:image image image image

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Oh, Lisa, thanks so much for the lovely photos of your ‘2nd birthday’ celebrations. It looks as if you all really celebrated in style and the cake looks yummy and the cards are just perfect.

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Great photos Lisa ! its so good to hear positive stories .
Erica my return to work is going well,last week I was far less tired and today I managed to work a four hour shift instead of three hours. We had a lovely weekend ,parkrun on Saturday and then a walk on the moors yesterday. Life is good !! Only working Wed and Thursday and then off to York for a weeks holiday to meet up with my lovely sons.
I am seeing a cancer support counsellor when I get back home and then back to Cardiff on the Friday for bloodtests and see my consultant.
Mark

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Mark, what a hectic life you lead. I was worn out just reading about it. It sounds as if you are sensibly building up your work shift hours. The parkrun and walk on the moors weekend sounds wonderful. Then off to York to see your lovely sons sound real quality time to me. My son is 45 and has bounced back to live with us, I have a funny feeling he is too comfortable with us (or am I making him too comfortable!!!) With the cost of renting around here he will never leave. I always wear a step meter and it is surprising how many steps I have just done today just locally here. I do a dance class, mainly Zumba, most days and I can predict about how many steps I will do. Please let us know how your cancer support counselling and blood tests go.

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Hello @parkrunmark,

I am so pleased to hear that you are able to manage a four hour shift from a previously three hour shift. It sounds as though your energy is getting better by the day! You recently had a trip to York and you mentioned that you were seeing a cancer support counselor upon return. How did your session go and also how was your appointment with your consultant?

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Good afternoon everyone.
My return to normality was lovely but unfortunately came to an end last month.
An unexpected phone call from my consultant telling me my latest bone marrow biopsy was showing signs that a relapse would probably happen.The NPM1 marker had changed from negative to positive.
I was still clinically in remission but the molecular markers showed a change.Another biopsy confirmed this was the case so on 24th Feb I was back in the haematology ward on a 5 day high dose chemo course to keep me in remission.
I am just starting to recover from that having been in and out of hospital with infections.
The next phase of my journey will be a stem cell transplant in the near future,not sure of a time line yet as I am still waitng for my counts to recover.
I am trying to stay positive but would be lying if i said I was not worried about what lies ahead. Thankfully my team caught it whilst still in remission and they seem confident I am a good candidate for transplant.
I will keep you posted on my progress
Mark

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Mark, good to hear from you but since we heard from you last a lot has happened to you and as you say you are worried about what lies ahead, I expect that is an understatement, for me it is the feelings of not knowing and not being in control. I hope you are still able to enjoy some exercise. We are all here to support you so please keep posting how you are and how you are feeling.

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Hi mark, sorry to hear you are relapsing but it’s good you are a candidate for a transplant. I have primary plasma cell leukemia which always relapses so it been easier for me as I have never had any expectations of a cure. It’s heartening to read your situation was picked up on at the earliest possible stage, I wish you all the very best of luck with your future treatment, I am off treatment and in plateau and doing well considering my situation.

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Hi Mark. How disappointing that the result of your recent bone marrow biopsy was not good, but top marks to your consultant on picking this up so quickly. The high dose chemo will have knocked your immunity to rock bottom, so be kind to yourself, and rest as much as possible. There are posts about SCT on the forum. I had my own cells harvested then transplanted 10 years ago. Looking after yourself physically will be a bonus when it comes to having the SCT. Keep in touch and I send my best wishes for what lies ahead

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Morning Mike,
I had AML nearly 11yrs ago aged 47. I went into remission after 1st round of chemo on Trial 15 but all my 6 & 9 chromosomes had swapped places so had worst prognosis of it recurring. Next step SCT. Luckily my youngest brother was an ideal match & this took place 10yrs, 7 months ago @ Southampton Hospital. The recovery was slow but I did everything I was told & I’m very pleased to say I now life life to the full.
Yes, it’s a scary thing to contemplate, but the teams do know what to expect all the way through, & you have to go with the flow. SCT is tough! Take things slowly afterwards & take baby steps.
But remain positive & determined that you’re going to fight all the way & win.
Best of luck.

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