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Pregnant and just been diagnosed with Hodgkin’s lymphoma

Mandy1991
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I'm terrified and scared, I can't sleep, I'm sick in the night through stress, my night sweats are horrid. I am awaiting staging and then treatment is to commence within the next 3 weeks. 
It will be ABVD only (double dose) once every 2 weeks for the next 6 months, and I'm 4 months pregnant, baby is due mid therapy. 
Atm I just don't know how I'm going to cope with this. I don't want this

  • Hello Mandy1991,

    I can understand this is a stressful time for you, but your doctor will take everything into consideration so that you're prepared for the next steps. If you need to speak someone our team of cancer nurses are available on the freephone 0808 800 4040. Lines open from Monday to Friday between 9am and 5pm. It might help to write down any questions you might have ahead of your next appointment, so that you feel more informed.

    Best wishes,

    Moderator Anastasia

  • Offline

    Hi  Mandy1991

    I am so sorry to hear your news. To be told you've got HL is bad enough, but during pregnancy also must be so scary. I really hope you've got plenty of support and are taking things day by day.

    Did you find out about your staging? Good Luck for your first treatment, I've heard the first two are worst and after that you get used to the routine and knowing how your body will react etc.

    I have young kids and have very recently developed a huge neck lump that appeared 2 weeks ago which is growing daily. I have my 2 week refererral appointment in 2 days. I too am terrified. My bloods are abnormal for high white blood cell count and inflammation markers, I have night sweats and my Doctor looked me in the eye and has told me she strongly suspects blood cancer.  

    How long did your diagnosis take from your first hospital appointment? I am hoping mine will be quick as the pressure from my neck is starting to feel like I'm being choked and I can't sleep or eat much.

    Take Care of yourself. 

     

     

  • Offline in reply to FayeTy

    Hi Faye Ty

    My lymph node core biopsy was on christmas eve, it wasnt until 31st Jan that i was told of the diagnosis of classical hodgkin lymphoma. After that i had an MRI the following sunday for the staging, this showed i have stage IIB, (so not spread beyond the diaphragm) with only the lymph nodes in my right neck and a couple of small ones in the centre of my chest - considering i first noticed a lump in my neck in March 2021 - id say ive been lucky in that it seems to have been slow going.

    If your doctor suspects blood cancer then you should be referred to haematology - it is the haematology department who care for blood cancers such as lymphomas. I also have an obstetirician who is super and looking after both me and the baby throughout the treatment. 

    One thing i will say, a FNA of the lymph node is not sufficient in detecting reed-sternberg cells - they must do a core biopsy, this was the major floor and why it took soo long for me to get the true diagnosis. 

    One week wait after the MRI before commencing ABVD chemo, which is for 6 cycles (2 treatments per cycle). The "B" drug will be dropped after 2 cycles. Im also giving myself G-CSF injections - which boosts your white blood cell count so your less likely to get a serious infection and end up hospitalized.

    Most of my anxiety has been fear of the unknown.

    I have now had my first chemo treatment, so i now feel less scared about them. Whilst everyone is different, and I know side effects may get worse as treatment continues, i was not bed ridden and ill as i thought i might be after my first Chemo. I had energy enough to cook a meal the night of, have been sleeping though the night, have not experienced nausea or vomiting. The only side effects ive really had is a little bit of anaemia (feeling faint when trying to walk up a hill -  so im sticking to flat paths now), and a bruised/sore vein that the cannula was inserted in....which a week later began to feel pretty much back to normal. 

    Thoughout the week i have been able to continue to perform household chores, washing up, cleaning, clothes washing etc. and have felt well enough to log on and work from home as normal.

    Im also glad to say, that just a week after my first Chemo treatment my neck lump/lumps have reduced from golf ball to pea sized!

    Your white blood cells might just be high becuase you may have an infection, not nessecarily lymphoma, and lymph nodes do/will swell in response to infection, so dont panic just yet. 

  • Offline in reply to Mandy1991

    Hi Mandy1991

    Good to hear from you. Good news re your staging and I'm pleased to hear your first treatment went better than expected and that you were actually able to do some chores and go to work!

    Not heard of double dose treatments, is that because of the stage? Sounds better all around as long as the side effects aren't too bad.

    I have been referred to Haematology. Expecting the worse based on Doctors assessment but I'll know more soon hopefully. I've had night sweats for a couple of months but they've stopped the last 3 nights, which is amazing, so fingers crossed they don't come back. 

    Were you lumps fast growing or did you have them for a while?

    You sound like a trooper and an expert already.

    Take Care

  • Offline in reply to FayeTy

    I think ordinarily they would usually use chemo in combo with radiation, but becuase im pregnant i just have the chemo. 

    My neck lump grew VERY slowly, it was only when i became pregnant that it really started swelling up. In 6 months prior to pregnancy it went from size of a small pea, to the size of a marble - so no significant quick growth. 

    Id been having night sweats since April 2019 - so they may not even be related - I always thought they were hormone or stress related prior to finding the lump. 

    I had experienced recent unexplained weight loss, which was my main indicator something wasnt right. 

  • Offline in reply to Mandy1991

    Hi Mandy1991

    Thanks for your reply. Only 1 day to wait now until I'm see under 2 week wait. The swelling is extra painful this morning, almost feels like it could burst it is so big and the pressure is horrible, it hurts to lift my arm.

    Funny thing is it all started 3 weeks ago after a jog when I suddenly got neck ache, thought I'd sprained it, and I was in agony and couldn't move it. I used Voltarol on my neck and Co-Codomol and even visited urgent care 2 days later as I couldn't sleep with the pain. Was told it could be neck spasm.My neck did start to improve  after 3 days, although still painful. Then about 10 days ago the inflammation started, and my neck would swell daily, despite me taking Naproxen. 

    Before all of this I went to see the Doctor on 02/02 as I had a sore throat and couples with the night sweats I'd had for several weeks I was worried. She checked my throat and said it was on the mend (which it was by the time I had the appointment) and did some bloods which all came back as normal.So in the space on 11 days I've gone from normal to abnormal. Saying that, if whatever this lump is it must be very aggressive owing to the size of this thing and that's it's growing rapidly 

    It's all such a mystery.

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