My daughters lymphoma

Hi my daughter has moved into a flat in ebbsfleet near blue water. We are just over the bridge in Thurrock near lakeside so not far from you . 
She is being seen over our way at Basildon hospital as this is where her gp still is . 

the consultant at Basildon she was first send to was a lung specialist as she had a continuous cough . He was fantastic he from the moment he had her referral made it his mission to get her ct and pet scan as soon as possible. So from first referral to diagnoses  was 3 weeks .

he then referred her to Hematology. I think it was because she had already had a cancer diagnosis last March 2019 for skin cancer .( Melanoma  ) thank goodness it was only stage 1a so they just took mole away . 
she has been very brave going in for her treatment on her own . They way she looks at it is what choice do I have if I want to beat this.! 
She is very determined to do just that . 
she has joined a Facebook group for young cancer people maybe that will help your daughter. My  daughter says that she has found it very helpful when she needs to ask questions. 
feel free to ask anyone questions we all need to be here for each other sending positivity. 

Sharon 

xxx

Hi Sharon 

your daughter certainly has had to deal with a lot of worry. I do think that their generation seem to better than us in some ways, I think their lives are generally harder and they seem to accept  things better. I forget with my daughter she’s not a little kid anymore, and sometimes you have to let them get on and cope with this, but still be there.

when did her cough start? And was that her only symptoms?  My draughter has her first appointment at Maidstone Haematology unit on Monday, I guess they just check her blood? Thank you for answering all my questions, it really a helps 

Hi 

I think her cough started mid January, she went to  A walk in centre and they gave her antibiotics, I then went with her couple of weeks later in February to the same place they said her chest sounded clear so thought she might have asthma, she told the gp that she also had a sore area around her chest but they said it was probably due to coughing so much. 
Three weeks later I took her to our family gp and insisted she had a chest X-ray , she was then immediately referred to a lung specialist.

other symptoms then made sense she had night sweats , a rash , pain in her abdomen but all these came and went .

when does your daughter have her pet scan ? Or has she already had it ? . 

her boyfriend has been really supportive. 

Sharon x

Hi sharon

thanks for coming back to me,it’s odd how the symptoms go, that happened to my daughter. She  has her scan next Friday. Did you daughter have any swollen lymph nodes? Has her spread very far if you don’t mind me asking. I think the worst bit for my daughter is the extreme tiredness and night sweats. 

I think it makes a huge difference , if there partners are supportive, it certainly makes me feel less anxious 

Hi

In some ways (and I hope I don't antagonise any adults with HL by saying this), it is worse to have a child suffer from a blood cancer than getting it yourself. I would happily give my life tomorrow to prevent what happened to my son.

The day before he was diagnosed with Stage 3B HL aged 14, he was sat with us in or local pub enjoying a meal, he had grown really gangly and tall to about 6 foot, but we hadn't really realised how thin he had got, we just thought it was growth-spirts. He was happily playing football at school the previous week. So apart from 10%> weight loss (that we hadn't really suspected until diagnosed), there were no other symptoms such as night sweats and fevers, just a small lump under his arm and itchy legs. A lot of HL is in the mediastinum (chest) where it often grows in lymph nodes so people feel short of breath, but when he had his PET scan there was a tiny 1cm inflamed node there which the specialists said may or may not be HL. But between taking him to the GP with this single node under his arm, and being thoroughly checked out and sent away with a follow up CT scan 6 weeks later, he developed HL in a few more nodes (cervical, neck, and in his spleen) - Stage 3B. The shock was dreadful, I cried most nights, just asking why why why? And why didnt I realise earlier?

Anyway, although I am still petrified, he is still in Complete Remission and he has his 3rd CT scan of the year following completion of treatment, tomorrow. He is doing great and its surprising just how well teenagers deal with adversity. 

I have studied lots of reports on the internet, but am just a lay person trying to interpret things, please remember that. And you must remember research and innovation is always improving so only the most up to date studies are applicable. OEPA-Copdac is the chemo regime mostly used in paediatric HL, and ABVD or Beacopp in adults. More aggressive chemo-regimes, Radiotherapy (Advanced Proton Radiotherapy), or Immunotherapy (Brentuximab-Vedotin) and other combinations are used as back-up for non-responding disease at interim assessment OR at the end-of-treatment, so Progression-Free Survival Rates (usually measured over 3 years, sometimes 5 years because it rarely reoccurs after that but still occasionally can do) are similar for all these days, it just takes longer for some people's disease to be addressed because its more stubborn. Even Stage 4 has around 85% success (PFS), and Stage 1 around 93% (PFS), and although its really hard to not perpetually worry I am encouraged by EuroNet results, whose protocols and regimes British Children's Cancer Hospitals generally follow. They have lost just 19 patients out of 2,111 with HL in EuroNet PHL-C1 trial. Ultimately, of course, people do pass away, we all will, that is a fact. But it is now one of the most treatable cancers, so although you will never stop worrying as a patient or parent, be reassured that they know what they are doing and have a very good chance of addressing it. Life will probably never be quite the same again, but eventually you do adapt.

Hi nick 

thank you so much for telling me about your sons lymphoma.The whole journey certainly isn’t a easy one to do. As a parent it isn’t something your prepared for, so when it happens it hits you like a rock.  I guess none of us are prepared for any kind of cancer, but like you said to have your own child with it , it really screws you up. The pain you feel inside at the thought of something that could potentially kill your child goes beyond anything I have ever felt. It’s frustrating, heartbreaking and totally not fare! 

i am so pleased your son is doing well and he is in remission. Good luck for his scan and fingers crossed for him. You will find the strength to keep going and continue to be a good parent.

Stay strong and take care 

kind regards julie x

I'm so so sorry to hear about your daughter. I'm 20 so not far off your daughter's age and was diagnosed with hodgkin lymphoma last week. I can really relate to your story as mine started before March too and it was really difficult trying to get doctors appointments and explaining things over the phone without them being able to physically seem the lumps I was talking about. There was a lot of testing done and a lot of waiting and I know how awful it is going through that kind of stuff, especially right now when you have to go in alone so please tell your daughter she is definitely not alone and she is so brave for getting through all this. 

I had pain constantly at night, sweating and high temperature. I've felt pains pretty much everywhere in my body and was terrified that it had spread everywhere. I know it's awful thinking about it but the PET scan will definitely show what is going on and where. That was pretty much the only thing that reassured me that it hadn't spread everywhere I thought it had.

I hope for the best and am crossing my fingers for you. The best thing is that when they have the results, they can have a much better idea of how to help and treat the problems. My doctor keeps repeating to me that Hodgkin lymphoma is very treatable even at all stages. I'm trying to hold on to that hope and I hope you both can too.

Love to you and your daughter,

Lily 

Hi lily

Thank you for your lovely kind comments, it really helps. My daughter was given her results today, and she is stage 4 b, it’s in her neck, spleen, pelvis and hip. So not good, but it could be worse. Once she has finished her fertility treatment she will start some new clinical trials then chemo. I am very proud of her, she’s being so brave and dealing with this so well.  

I am sorry to hear you have had a rotten time too, it’s not easy and yes it’s worrying at times. How far are you with your treatments? You sound a very positive and brave young lady, and by passing on your positive and kind thoughts you are helping people on here. So thank you for being so supportive. My daughter is on here , on the lymphoma group , pink peony. Feel free to have a chat with her, it’s hard if you have no one to talk to . 

I noticed you haven’t filled in your profile, it can help when this is filled in, so people can help you and chat with you. I actually forgot to do mine initially, and when I did it really helps. 

like you said lily , you have a very treatable cancer and please keep that in your mind when you have a bad day, and it will really help you. You will get through this and we will all smile again. 

hope to speak soon 

bless your heart lily & take care xx

Hi Julie/, 

I’m sorry your lass is at stage 4b, what a bummer! But it will mean they will concentrate on hitting it hard with all they can. 

Keep posting, we are all holding your hands...

Hugs xxx

Julie,

Glad she's got her results even though they're obviously not the best news. The important thing is to focus on the treatments and what they can do to help her. I really hope everything goes well and she sounds so strong!

I've just signed consent forms for my treatments yesterday. They've actually changed their mind about a few things but I should be having 4 rounds of chemotherapy, 2 of one type and 2 of another. Got to do a quick fertility treatment like your daughter beforehand but things should be starting in about two weeks.

Thank you for your kind words also, I really appreciate it. I will try to find your daughter on the lymphoma group as I know how hard it is not finding people to talk to.

I'm also going to fill in my profile soon like you said; I didn't realise at first you could fill it in.

Thank you again and best wishes,