Hodgkins Lymphoma stage 3

Good morning HopefulK and a warm welcome to this corner of the community, it’s good that you have found all the posts helpful….. as you have had a good read you will know that I don’t have Hodgkin's Lymphoma but have been on my rare, incurable NHL journey for over 24 years….. so I do appreciate the road you are on well.

Sorry to hear that you didn’t qualify for egg preservation but please do not give up hope of having another little one….. over the years I have been volunteering on this community and with Lymphoma Action I have talked with many women who were in the exact same position as you….  as few also going through Stem Cell Trabsplsnt and they had children post treatments.

HL is seen as being on the rare-ish side….. but not as rare as my 7 in a million type of Low-grade non-Hodgkin lymphoma (CTCL)……. the most important thing to keep in mind that on the whole the initial aim of the treatments you will have is to cure…… my type of NHL is incurable…… but that has not stopped me living a great life, yes I had some full on treatments but I am 8.5 years out from my last treatment, turned 68 last Nov and doing great.

The choice of drug regimes, in your case ABVD or secBEACOPP can be confusing but this is when you trust your team as they know your HL best…… and you also look for other people’s experiences so let’s see who is still looking into the group.

It’s important to realise that a lot of people, once they have completed their treatment move away from these groups and get on with life.

You will find this link helpful as you get ready for treatment.. 

Top Tips for the day of your Chemotherapy

You will see that I often mention Lymphoma Action.

Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment….. I am also volunteer for LA.

LA run regular Support Platforms..... I highly recommend these groups as there is nothing better than ‘talking’ with others who have walked the journey……. and you will find a much larger group of active people.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

Always around to chat and support as best as I can ((hugs))

Hello

I just wanted to express some solidarity. 13 years ago I was 33 and received a stage 3 HL diagnosis. I had had two kids but was very much planning on having a big family however my consultant decided that my family was complete and that we should begin treatment immediately. 6 months of ABVD later and I was in remission, still am, touch wood.

What I would say to you is that, once I was physically well again and once I had processed what had happened to me (which took some work tbh) I decided to just count my blessings and enjoy what I had. We moved somewhere beautiful and I gave up a well paid job to work locally so I could concentrate on enjoying being a Mum.

You already know you're going to need to pull on resources you're not sure you have. You do. You can do this and you can make the most of life afterwards. It's too strong to say I'm glad it happened, it was horrible but I came out the other side a more appreciative person with a stronger sense of perspective who takes less sh1t!

Thinking of you.

Hey Hayley!

I couldn’t not write back quickly! We are on a family break, just my hubby and our 3 year old, currently going through treatment for Stage 4 HL. So we are off out for the day but couldn’t just pass by your so important message!

you’re so right! Wonderful message and I’m so pleased for you to see light, calmness, patience and gratitude after all you’ve been through.

and who’s to say that after AVBD you may still have great fertility. 
I am having escBEACOPP and they say my chances of infertility and earmy menopause is high. But my hubby and I still have hope!

Sarah x 

Best of luck Sarah!

Kids will keep you grounded too as they basically couldn't care less about what you're giong through as long as the fishfingers are on the table at tea time! 

I did have a relatively early menopause in the end which I hadn't been warned might happen so I'm glad you're aware of that possibility.

Much love,

Hi Hopefulk,

I have been through what you are going through with the exceptions of being male and being stage 4.

i am new to this community so would have replied sooner if I could.

I was in remission after the first two cycles but did the whole six, I’m sure by looking when you posted this that you are near the end or have already finished treatment.

It’s a tough ride for anyone but especially for a female who was looking forward to bringing children into the world. I am almost 60 so it’s about grandchildren now for me.

You sound like a great mother and really could offer a fantastic home for a child in care, so I would definitely support that for what my opinion is worth.

I do hope you are doing well and it would be great to get a conversation going, I had many chats with other patients on the chemo unit and it was great to share our pains and traumas, but also the positives. I am currently recovering from treatment and am looking forward to getting my fitness back, building up my lung capacity which has been negatively affected by the treatment. Anyhow enough about me for now, it would be great to know how you are getting along three months later.

Hi Sarah,

I am new to this community but would have replied earlier if I could have.

It seems that we had the same stage 4 HL, mine was in my neck, chest, pelvis, and into the bone. I don’t know how far into treatment you are, but I have completed all the cycles and got to ring the bell. I really hope and pray that you too are at that place two months on.

I can’t say I had it bad with side effects, however the indigestion and coming down from steroids was really not pleasant.

My treatment finished just over two weeks ago so I am still recovering from that, but will soon be starting to get out walking to recover my fitness as the treatment has affected my lung capacity.

Anyhow stay strong and never give up, even if it takes a good moan or rant. Believe me, I’ve done plenty of that lol, my wife calls me Meldrew now ha ha.