Just an update in case anyone comes across this post. I will keep updating, as I know this forum has helped me so much and its always good to hear the final outcome, either way. 

So, I called the hospital and I'm booked in for a chest x-ray in a few weeks. However, the ultrasound of my neck is going to be at least 16 weeks! So I have called a private hospital and I'm going to have my scan done there to speed things up. 

I checked my notes from the GP on my online records and the GP is concerned and put the referral through as URGENT. However, there is also a comment stating 'doesn't appear to meet the 2ww criteria.' So although this is a good sign that the GP hasn't put it through as the two week referral, during my appointment he was concerned and said he wanted it done urgently. So on the one hand I'm thinking I should just wait as the GP can't be that concerned, but on the other hand, there is no way I can wait 16 weeks with this worry. So the cost of the scan will be worth it, even if just to save me 16 weeks of worry and give me some answers. Apparently I'll get the scan results there and then. X 

Hi, I am also playing the waiting game for a swollen lymph node diagnoses. My lump is in the right side of my neck and has been present for around 6/7 moths but getting bigger.

I had a GP referral (non urgent) for an ultrasound which happened just over a week ago. The Dr took two biopsies and said that my results would be fastracked and the the hospital would be taking over my care. 

I have an appointment with the haematology consultant on the 24th and the wait is really starting to get me down. I'm trying to stay busy and distract myself but it's tricky at times.

Sending you strength and support xxx

Hi Chloe, Oh no I'm so sorry to hear that. I know our immediate reaction is to worry, but hopefully it's nothing to be concerned about since the doctor didn't seem to be concerned at your ultrasound. Let us know how you get on. Good luck xxx

Thanks Sallx!

Just had my appointment- she said none of the lymph nodes looked concerning on the ultrasound but they did note a thyroid nodule, so I've been sent to get some bloods to test its functioning! Let's move on to my next worry now about thyroid cancer hopefully its also fine, she wasn't worried at all! 

All the best, Chloe

Hi all! Sorry I've been so quiet- I've just been getting through day by day.

My 'planned' chemo sessions have ended and I'm due to start radiotherapy in just over two weeks. I'm hopeful I won't need any more chemotherapy but I should find out for certain next week.

I hope you're all doing ok? Sorry to hear about your diagnosis Judgey - it sounds like we may be on a similar path.

My husband and I are taking the kids to Euro Disney (booked before my diagnosis) in just over a week and I've been signed off by the doctors to go so it's all systems go now trying to organise everything!

Lots of love and light to you xx

Hi Rose, 

So glad to hear your chemo went smoothly - hopefully you're over the worst of it now! If you don't mind me asking, how many cycles did you have? 

Less positive on my end - I had my first ABVD on Tuesday 22nd and I've been in hospital the last 3 days after developing heart palpitations on Tuesday and ending up in A&E til 5am :( No sign of being discharged before the weekend either unfortunately as my troponin (heart damage marker) is still too high. They think the Adriamycin is the culprit - it is known to be toxic to the heart so I guess I just got unlucky and it was a bit too much for my heart! I was meant to have the second chemo of my first round on Tuesday coming, but it will be delayed now as they need to decide what to do about the Adriamycin. Heart should be fine though, troponin levels are dropping and all the other scans have looked fine thus far, so fingers crossed it was just a bump in the road. I'm also due to get a PICC line put in my arm because they had a hard time getting my chemo cannula in (I'm 25 and apparantly "young" veins are deeper in your arm and make me a difficult patient ha!), so Ill have a permanent (until im done chemo) port in my arm from Monday. 

Bit of a rough journey and I've been feeling a bit sorry for myself in the hospital as I have never been admitted before! Hoping I'm just getting my "drama" out of the way early and it will be smooth sailing after this, rather than this being a sign of things to come!

Hope the rest of you are all doing well and have been able to put everything to the back of your minds after getting the all clear. Hope you have a great time on holidays Rose!! 

Hi Judgey, what an absolute nightmare. I'm so sorry to hear it's been so rough. I had two cycles of ABVD (so 4 doses in total) and the only issue I had was that the vinblastin caused tingling etc so I didn't have the last dose of that drug to avoid permanent nerve damage.

I had my PICC line in for the first dose and it's still in now - I'm really hoping they'll take it put next week. 

I'll be keeping everything crossed for you xxx 

Ah same as me so! Im supposed to have 2 cycles + radio too. I had scarsely any other side effects apart from achey + tired (the omeprazol completely dealt with the nausea, literally havent felt ill so far) so hopefully once they sort out my adriamycin dose or whatever the other three drugs wont cause any bother! 

Hope the tingling goes away for you, I've heard thats quite an unpleasant side effect! My mouth went a bit tingly for a few days, made everything taste like it was spicey, even yoghurt, very weird! 

Hope the radiotherapy goes smoothly for you x

Thank you Judgey, sounds like our plans are identical! 

I'm so pleased to hear that you've not suffered many side effects - long may that continue. From my experience they have LOTS of things to help if you struggle with side effects so if anything changes then all you need do is tell them and they can help.

I really hope you get out of hospital soon and that the treatment carries in drama-free. If you ever wanted to message me with a question please feel free to do so.

Lots of love xx

Quick little update - 

Just got out of hospital on Tuesday after 6 nights in a coronary care unit after developing palpitations and tachycardia a week after my first ABVD. Had an appointment with my consultant today about the plan going forward - theyre going to take me off ABVD and give me 2 cycles of GemCis (Gemcitibine and Cisplatin) starting on the 19th to give my heart a chance to heal. GemCis is what they usually give for recurrences/refractory cases, and my consultant said in the 200-300 Hodgkin patients he's seen over his career, he's never had someone have such a sensitivity to Adriamycin before! Hopefully no more nasty surprises in store for me! 

Hey, how are you girls doing? I'm back worrying again! 
 

I have two lumps, both sides, just in front of my ear on my jaw. They’ve been there 2 months. My bloods came back with high MCV and high MCH. I have an appointment Tuesday with a specialist and a scan on Friday. I am tired but that’s nothing new. The nurse who I've seen and spoken to just keeps saying to see if they go down. x 

Just re-read my previous post. Not very positive. Apologies all. 

Just re-read my previous post. Not very positive. Apologies all. 

I started with night sweats after my daughter was born March 20

Kept going to the gp who put it down to new baby hormones  breast feeding etc then 8 months passed and I was still having them plus I mentioned all the glands in my neck were swollen  so may have an infection

I got referred fast track to haematology who did bloods and scan. Numerous enlarged lymph nodes in neck and groin, enlarged spleen and slightly raised platelets on bloods 

Lymph biospiy taken from groin which just showed some inflammation so they said they would monitor - every appointment after that was phone based for covid and I kept saying nothing had changed had another baby since. 

Still having drenching night sweats most nights  and cab feel my enlarged nodes in neck and groin 

Finally had a face to face on Thursday and referring for a urgent scan to see.. but said that bloods look fine. 

Obvisouly hoping for same results but would really like my night sweats to be sorted out..... is there anything you can take for them if they dont.find an actual cause? 

Hi, how did you get on? Any update?