Hi, new to Bloodwise, but used it in a previous form some years ago.
I was diagnosed with bulky NS Hodgkins 16 years ago, had 6 cycles of ABVD which left me with 1 active mode which was due for radiotherapy- unfortunately there was a delay and it spread- so I had an auto stem cell transplant and was fine until a couple of months ago. I felt new nodes in my neck in exactly the same place as previously- no other symptoms- just like last time. I had an ultrasound 4 days ago and the consultant confirmed a likely relapse based on how the nodes looked - two core biopsies and he referred me for a CT which I had yesterday. The old haematology dept declines to see me without a cancer diagnosis- so my GP arranged for the ultrasound- all my consultations have been by telephone so far. Also the haematology unit I was originally treated at had been downgraded and so I’m likely to need a new one, which I’m in part glad about because my original consultant was amazing and had transplant experience. Things have moved on in those 15 years treatment wise and I hope to have the biopsy results on Tuesday- again by telephone and an appointment with haematology at some point in the near future. Covid adds to my stress levels, I’m trying to keep busy and am determined to finish my couch to 5 running around the garden!
Hi, new to Bloodwise, but used it in a previous form some years ago.
@Daisy. I am sorry to read your news, and it is even more difficult not being able to talk to someone face to face. I had bulky NS HL 13 years ago, an operation to remove the tumour, then abvd. A couple of months after treatment finished I had multiple relapses, other complications and then SCT. I had RT a few months later to neck and chest. I was given 30% chance of surviving the first year, but am still here eleven years later.
I tell you this to give you hope, that relapsing is not the end of the world. The treatments are probably not the same as I had. Please keep in touch and tell us how you get on. The good news is that people are being urged to seek out treatment if they feel something is not right, so that is a positive.
Best wishes, Louise
Hi @Daisy how are you? and wishing you a warm welcome to the forum.
I echo what Louise has said, I was so sorry to read your message and can only imagine how much this current situation heightens the understandable anxiety of this. How much support have you been able to get from your GP?
Daisy, it’s so encouraging to hear you’ve been able to find things which help you like keeping active. Do you have support around you? People you can talk to?
Hi @Daisy, yes, a great big welcome and I am glad you have found the website again and now our forum. It must really be a scary time for you especially having all your appointments given by telephone. Have you got a specialised hospital near to you? Yes, all blood cancer treatments have really moved on in the last 15 years, I believe. Have you got any support around you? I know what you mean by raised stress levels and also more time for the brain to start whirring around, not a good combination for me at all.
Please do use this forum for support and let us know how you get on at each stage?
Thank you for your kind replies, it’s encouraging to hear your stories and successes. I’ve spoken to my GP once by phone - sympathetic noises a week ago. The hospital I attended is an hour away, it’s an hour and a half to the next hospital which is now the regional centre
I’m keeping it together fairly well. I have two amazing sons and a lovely husband - first husband had a spectacular mid life crisis a year after the SCT.
Just a few more days and I hope I’ll have results and know what I’m dealing with. I feel so well - just like last time and am just so sad after all this time to face it again.
Well, you’ve got us to support you now as well. I am so glad you have two amazing sons and a lovely husband too. I had a first husband too that was off like a flash when he was needed. Yes, just a few more (long, I expect) days and you will know more what is going on, please let us know when you do. Try and spoil yourself this weekend, we have got shortbread and a toffee roulade, my favourites.
Hello @Daisy I know mentioned you had get some of your results today. I hope you’re doing okay and I really hope that today has gone/goes as well as it can for you. Just remember we are here to support you, like @Erica says.
And also, our support line is here too on 0808 2080 888 and firstname.lastname@example.org.
So sorry to hear what has been going on. Of course this must be a dreadfully difficult time for you. Not made any easier because it is happening when it is in the middle of COVID19. As always it is hard to stop and figture it all out. But lets take this step by step. sounds like something may be going on but you do not yet know whether it really is a relapse or if it is one what the histology etc will look at. So you have to wait. What I am finding a bit hard to follow from your comments is who’s going to be looking after you. I think this is the time to run from any local haematologist who isn’t an expert. Where about in the country are you. I wish we had a simple to read list of experts for the various top sites. Well we almost do. I would want to see someone with a special interest in Hodkins Lymphoma if I was you especially if you are relapsing. True experts in a disease show they are specialists by speaking at conferences on the subject, running clinical trials (there might be exciting ones available if you do need treatment) and publishing clinical papers in the literature. In some ways the last one is the least important way of identifying but it is also the easiest. You could try and find what clinical trials are underway and trace where the experts are that way but that can be bothersome. Instead, why not have a look at this tool: http://expertscape.com/ex/hodgkin+disease/c/uk
You can find the top UK experts by publications and figure out who lives closest to you. The tool is not ideal as sometimes doctors are still linked to institutions they have moved from and sometimes non clinical experts are in the list too who are good if you want them to do an academic discussion but not a clinical conversation. Find a name that looks promising and google that name with NHS to check they really are a consultant! Of course maybe you already saw a top expert before in which case jus get yourself referred there. You may need some help advocating as it is hard to actually get seen and get things done at the moment. So its good a biopsy has been done. Was the original consultant an expert in this disease? Definitely go back to him or her if they are an expert but if they are more of a transplant expert you want one in what you have. Very occasionally someone has something different that comes back not the exact thing you had. So the biopsy is good will you get the results from that with the GP, would be good to be armed with knowing exactly who you want to be referred to,
Hi @Daisy just checking in to see how you are? How are you feeling about your results? You are also very welcome to our support line, if you would like to talk this through more privately, it can be reached on 0808 2080 888 Monday-Friday 10am-7pm and on weekends between 10am-1pm or you can also reach us via email@example.com.
A recap- I’ve been holding my breath for the core biopsy results - inflammatory response, but the person doing the scan/ biopsy referred me for a CT, just had phone call from haematology nurse, discussed me at the MDT this morning and I also have nodes in my mediastinum- they think it is a relapse, bloods and an appointment on the 1st of June. Possibility of another biopsy - excisional rather than core/ needle. I’m in North Wales and have asked about onward referral - Christie in Manchester would be where I’d go if necessary- feel like asking for there now at this point. Thank goodness I had the CT arranged, haematology consultant advised no further action based on biopsy. Thanks for your support, I’d been trying to be optimist, but this is difficult and I’m also a nurse and work in the hospital where I was treated- although I had a shielding letter arrive a week ago and am now at home.
Hi @Daisy, I can hear your understandable anxiety in your post, perhaps it is even worse to hear news when you are shielding at home feeling isolated. There must also be positives and negatives to be treated in a hospital where you work. We are here to support you and perhaps understand as our nearest and very dearest are not able to. I have found personally just writing down my fears, thoughts and feelings does help me.
Have you got any support?
Yes, I have family who are brilliant for support as are friends too. I guess it’s just the wait now - definitely looks like Hodgkin’s again , just needing the finer details and a plan - appointment on 1st x
Hi @Daisy, I am so glad you have brilliant support around you, it makes all the difference. Please let us know how you get on on the first.
I spoke at a Bloodwise (now Blood Cancer UK) event at The Christie two years ago and was very impressed with the awareness of emotional and physical needs of patients and carers. They are one of the first centres in the UK with a proton beam centre. They also have a Maggie’s Centre across the road, accessing mindfulness, massage and other therapies for the whole family. Also a lady who worked in the Bloodwise office in Birmingham now works for another charity in the Christie. We met up for a coffee and catch up while I was there. Everyone is so friendly and welcoming.
Sending best wishes for your appointment on June 1st. Write down any queries for the day. Also I would like to point you to the information on the Blood Cancer UK website about Hodgkins. We are all thinking of you xx
Thank you, sounds like the place I need to be at this time, appointment locally first. Thanks for your kind response.
@Daisy Hi Daisy, just checking in to find out how you are? I was so sorry to read your posts, but so reassuring to hear that you have supportive family and friends. Please do keep reaching out.
@Pisces56 what a lovely message! and good on you for speaking at the event and thank you so much for sharing your experience. You make such a good point about writing down questions before an appointment, it’s something we really do encourage- and it can take the pressure off trying to remember everything.
Today I saw the consultant and he thinks I have Sarcoidosis rather than a relapse. Had a blood test today and have been referred to the respiratory team. Thank you so much for your support and I wish you all well in your journeys x
Thanks @Daisy, for letting us know, interesting, and please let us know how you get on with the respiratory team. How are you feeling about your visit to the consultant? Stay safe.
Reassured- he went down and spoke to the Lymphoma panel in South Wales, he was happy the biopsy result was accurate and had discussed my case with his colleagues. It was such a shame I’d been told by two health professionals that I’d relapsed and there was a delay being seen in clinic.
Hi @Daisy, I am also always reassured when a medical person discusses my case with peers. But also as you say such a shame to have been told by 2 professionals that you had relapsed. Please keep posting how you get on.