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Infertility and Dealing With It

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KatieS Total Reaction Points: 0
Hello All,

I wrote on here a few weeks ago about whether or not to go ahead with an auto or allo transplant. I decided, with the advice from my doctors, to go for an auto transplant. I've had my stem cells harvested and it was all due to start at the beginning of august. I underwent an egg freezing process, I am 31 and I don't have children, but desperately want them. The egg freezing process didn't work and I was told there was nothing more they could do. Perhaps due to all the stress I am under, and my low immune system, I ended up getting shingles, and the transplant has been delayed until the end of August. Of course, my first thought was to try another egg freezing process. But the doctors don't want me to have it as they don;t think there will be a different outcome. I am devastated.

I am worried that in having the transplant I am giving up all chances of having a child of my own and I am so worried about how this is going to affect me mentally. I am so close to saying I don't want the transplant. I am in remission at the moment and could take my chances and just have more arsenic treatment rather than a transplant.

I am not coping very well, although to those around me I tend to put on a brave face. But I am so worried about it all and I know it sounds odd but to me a life without my own child seems almost unbearable. I know I can possibly adopt or have an egg donor, but I cannot comprehend those at the moment.

Has anyone else been in this situation, or is in this situation?

Thanks,

Kate.

Answers

  • SuePSueP Total Reaction Points: 51
    Hi Kate,

    I'm one of the community champions on this forum. I'm so sorry to read about the situation you find yourself in. I was 45 when I first started chemo and had completed my family but I can empathise with you to some extent.

    I know you're asking about anyone else in this position but I'm sure also one of the Anthony Nolan professionals who understand the medical issues will get back to you as soon as possible. They regularly monitor these boards.

    The Community Champions are a disparate group but we will all have had experience of 'putting a brave face on' and it isn't always easy. So please use this forum when you need to. Rest assured we will all be supporting you.

    I do hope you are recovering from your shingles now.

    With very best wishes,
    Sue
  • Rachelj01 Total Reaction Points: 21
    Kate

    I'm so sorry to read the above. I was 38 when I was diagnosed with AML and was told there wasn't the time to collect eggs. I had the treatment for the AML followed by a transplant and I am now in the menopause so it's pretty safe to say I doubt there is even the smallest chance that I am able to have a child now.

    At first I was devastated by the idea that I would not be able to have children. I told my partner at the time to leave me as I didn't want to prevent him having a family. It did take some time to get my head around and take into consideration that you have had to take on board so many awful, frightening things in the last few months that coming to terms with the long term effects infertility included can possibly be expecting too much of yourself at this stage in your treatment.

    I've come to terms with it now and I'm embracing the opportunities a life without children offers. I can travel when and where I like (health permitting) ambitions and dreams I have I'm able to follow rather than put on hold as many parents are forced too. I am fortunate to have nephews and a niece, I love them all the more and probably have a stronger relationship as they will be the nearest I ever come to being a mother.

    I understand as a woman it's a huge part of our identity and most women (myself included) want to have a child but in truth known of us know if we will be granted that wish. Whilst I have medical reasons for infertility I sadly know many women who have unexplained infertility.

    I'd strongly suggest speaking to a counsellor to help you work through how you feel. I'd also ask if there are other patients who are similar age to yourself who have tackled this problem, maybe by under going egg donation or adoption, fostering. There is nothing to say you can't be a mother one day (all be in maybe not your own child) and think about all the strength, love and wisdom you can give to that child / children.

    Happy to talk more if you need to.

    Rachel


  • Hayley_Anthony Nolan Hayley_Anthony Nolan Total Reaction Points: 66
    Hi Kate

    I am the nurse specialist in the patient services team. The impact of infertility is a side effect of treatment can be unacknowledged as the focus tends to be on your treatment. Treatment is important but the effects on your quality of life and your mental wellbeing is as important. It is very normal to feel the way you do and I am sure there have been many women in your position who have felt the same. Its very brave to say how you feel on this forum and its enabled Rachel to share her experience which I am sure you have found helpful. You do not have to put on a brave face for your family and friends, I imagine they will want to be there for you and if they know you they will know how devastated you would feel. I think that receiving some counselling will help, the impact of all that you have been through should not be ignored. Lots of patients that I have worked with have benefited from speaking to a counsellor, you can ask for a referral via your transplant consultant or your GP. You could look on the Macmillan website as they will have local support groups that you can access. Its really important that you ask for help and do not struggle with this on your own, you are not on your own.

    You could also discuss the treatment options again with your consultant and explain your concerns. I do not think they would suggest a transplant if they did not think that it was the best treatment option but its really important that when you go in for the transplant you are completely on board with the decision. You could speak to a fertility specialist too who could answer some of your questions, but I guess you have a lot to think about at the moment and this might be something to think about after the transplant.

    The most important message is to speak to someone and get some support. You are welcome to call us our number is 0303 303 0303

    Please keep in touch with your progress.

    BW
    Hayley
  • beckybrambeckybram Total Reaction Points: 20
    Hi Katie

    These feelings and fears are ones I think most women & men who are young and don't yet have a family yet go through when needing a transplant, its a very scary thought that a transplant can end your chances of conceiving. I think we take it for granted that when the time is right we will be able to start a family so the feeling of that big decision in your life being taken away is incredibly stressful and your mind goes into overdrive of what ifs, but the most important thing for me was the chance at life but I struggled very much with the idea of not being able to have a child. This being said not everyone gets early menopause from the chemo.

    I had fertility treatment before my transplant but similar to you it did not go as we had hoped as they only managed to harvest three eggs, in normal circumstances this may be enough but with a 50% chance of the eggs having my illness they need to be tested before proceeding with further fertility treatment when ready to start a family, this means my chances of the eggs being usable are extremely low and even if one is useable I would be very lucky if it worked first time so then I'm out of eggs.

    Like you all these feelings along with all the transplant worries was a huge strain but talking to people does help please do as said in other comments express your feelings to your consultants, and although it doesn't seem like it there are other options, such as egg donors or even adoption, like you I couldn't think about these options at the time but I always had it at the back of my mind that there are options. It is very hard to not think about these things when faced with needing a transplant but I don't think you really come to terms with everything until after transplant with time to reflect. As in the other comments you can expect to much of yourself but always remember there will be options no matter what your fertility circumstances become after a transplant

    Now i am almost two years post transplant I am 31 years old and without a transplant my chances of living long were slim so I am thankful, I do hope to start a family one day and will overcome the hurdles as they come. i have developed early menopause and plan to have what few eggs I have tested for my illness when I am well enough.

    Wishing you all the best with your treatment
  • KatieS Total Reaction Points: 0
    Thank you all for taking the time to reply to me. I really appreciate it.
    I seem to be focusing so much on the fertility side of things at the moment, that it is almost blurring my thought process as to whether I want to go ahead with the transplant at all. It's an odd one for me, as I leukaemia free at the moment and that seems to be making me think I can carry on without the transplant and go on to have a 'normal' life. But I know that would be going against the advice of my doctors.

    I think you are right, I did take it for granted that I would be able to have children one day, and now kick myself for not having them sooner. I know it sounds dramatic, but I am struggling to see a future without them. I know adoption and egg donation will be an option, perhaps in the future. Which is a little bit of comfort to me. But the grieving process of not having the opportunity to have your own is extremely difficult. I think you are right as well, in that I am expecting too much of myself at this stage. It is a lot to deal with all in one go, isn't it.

    Thank you all so much for your responses, you are all extremely brave and kind to share your experiences with me. It has helped me. I'm sorry to hear all the struggles you are going through. It's the side effect that isn't really talked about openly and I think the response I get from many people is "they can work wonders these days" it's almost hard to explain to people that you are infertile now as they don't seem to believe it.
    I did try to contact the counsellor available through the fertility clinic but haven't had a reply as yet. I've also been in contact with a second fertility clinic for an opinion. My specialist nurses have been amazing, essentially the decision is down to me and to be honest it seems like a huge gamble either way at the moment. All very overwhelming.

    Kate
  • SuePSueP Total Reaction Points: 51
    Hi All,

    Have you seen there is a new blog on the Anthony Nolan Patients and Families Facebook Page about fertility issues after transplant. It's Billie speaking to Megan, age 25, who's had two transplants. It also describes her cord blood and Haplo transplants.

    Best wishes,
    Sue
  • KatieS Total Reaction Points: 0
    Thank you Sue, yes i did see that article. Very interesting.

    Just to let you know I am right in the middle of an auto transplant now, I am on day -6 so I've had all my radiotherapy and total body irradiation, which has left me burnt and with grade 1 mucositis. Waiting to start me chemo later today.
    The one thing i am finding really puzzling, is that my neutrophils have steadily been rising since I was admitted last sunday and now they are 8.3!!! That is the highest they have been for a year, I am usually around the 1 and 2 marks! Can't believe it. Is this normal? Hope it is not an indication of an infection. They don't seem concerned.


    Can't wait for this all to be over.

    Kate.
  • Rachelj01 Total Reaction Points: 21
    Katie

    Good luck, you are in for a tough for weeks, hang in there. When you look back it's amazing how low you go and how quickly you rebound.

    Thinking of you.

    Rachel
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