stories of relapse hl

as i found a new lump and waiting to see my own heamatoligist next week ,i’m concerned it is relapse and would like to hear peoples stories regarding relapse ,first signs what happened etc .i have been in remission for 15 months
jayne xx

Hi Jayne,
Lets keep fingers crossed that this is a false alarm. I know how worrying it it to relapse, the thing is with me I just knew that I had relapsed and first time round it was me that had to convince the doctors.

I had ABVD back in 2004/05 and in Sep 2010 I started with a huge pain in my groin anytime I had anything alcoholic (even just a couple of sips!). After seeing nerve specialists, I had an x-ray, ultra sound and then a CT scan (without the contrast) that failed to pick up my HL. The doctors told me I had not relapsed and after 5 months I finally convinced them to do a PET scan which confirmed relapse in Feb 11.

Last year I had a DHAP chemo followed by LEAM and a stem cell transplant in May. I thought that was the end of it but in November I started with the alcohol pain, a CT scan again did not show relapse so I had a PET scan in December which confirmed relapse. Shortly after the alcohol pain started I also started to lose weight and bagan with night sweats.

Please also try not to panic as I too had a false alarm back in about 2007. I had enlarged lymph nodes under my armpit and was concerned I had relapsed. It turned out just to be an infection.

Keep positive, easy to say but I know that the waiting is the worst thing to handle.
Good luck with your appointment,
Let me know how it goes.

Linda X

Hi Jaynie,
I found a lump in my neck at the end of November 2009 - after biopsies I was diagnosed with HL (4B) on CHristmas Eve and underwent chemo (ABVD) in 2010. I was in remission after my 2nd cycle. I finished chemo in July 2010. I found a lump in the original place in October 2010 and was rediagnosed after biopsy and PET scan Decemebr 2010. Yes it was scary but I was glad I could go straight back to the specialist rather than GP who initially told me my lump was probably just an infected gland and to go away!!

I hope your appointment went OK and enjoyed your 40th birthday

thanks for your reply both of you it means alot i am so scared ,i went to see my heamatoligist and he said that he doesnt think it is anything to worry about the lump is only half a cm, and that some of us get lumps that are not anything sinister.i always thought a lymph node got swollen to fight infection or when it is malignent ,anyway he wants to see me in 6 weeks to check it again ,how can he know without doing a biopsy(he said its to small for that) or a scan.
am i worrying unduly and making something out of nothing or should i push 4 a scan. the lumps still there dont think its got bigger it is now 2 months old,i have no other symptoms but saying that i have never felt better since having chemo ,i have other issues i have fibromyalgia (tiredness fatigue pain etc) and got diagnosed with diabetes just b4 xmas.i must say that i have these terrible sweats when i do the slightest thing i could brake into a sweat making a cup of tea,we thoughts these were part of the hl cos when i had chemo they stopped but when i was receiving treatment i did nothing but sleep then we thought that maybe they were the diabetes but i didnt have diabetes before hl they reckon i must have got it after treatment as they checked for it during the time before diagnosis and after treatment i put alot of weight on fast and then because the sweats were still there i went to docs and they took bloods ect and was told of the diabetes,i am waffling now but hopefully u get the picture,i would love to know what your thoughts are about lump etc
thanks for taking the time to read this,
jayne x

Iv relapsed! and i new from alcohole! im in for my Biopsy on tues,

Found out last fri that my Hodgkins is def back, so I’m going to have some chemo and then a transplant, I’d been clear about 6months, my symptom was every time I drank alcohol I got a terrible pain in my shoulder/arm. The first time I got diagnosed I had a terrible itch! All over! It was herendus! Funny how things show them selfs.
How have you got on? X

And you should def see the doctor if you even think for a second that your cancer is back’! It’s better to be safe than sorry xx

Hi I was diagnosed with HL nodular sclerosing stage 2a in Jan 2012, I had a clear pet scan after 2 months of ABVD, I went on to have 6 cycles.
I had a clear CT scan August 2012. A lump appeared about 7 months ago and I went back to see a Consultant, he had 2 ultra sounds taken on my neck and told me it all seemed fine.
Because I had nodular sclerosing which I have been told means scaring, I could expect a few lumps and bumps.

The Consultant said when I see reoccurring HL I expect the lymph node to double in size in a month.
My lymph nodes were never that enlarged in the first place, I had 5: 1 at 17mm, 2 at 12mm and 2 at 10mm

The lump is still there, sometimes it swells up, sometimes it goes down, it is about 1 cm most of the time. I have been told a lymph node is not described as enlarged until it reaches 1 cm.

I was a little like RaverBird, I had a terrible itch first time round. This time I have had a few alcohol pains, but these have stopped. The lump is uncomfortable a lot of the day as my seat belt rubs on it. I am pretty baffled, but I have another examination on 30th August, I would have liked to know what treatment RaverBird went on to have.
I have heard sometimes if HL returns in one site, they may just deal with it by radiotherapy.
Any comments welcome

Hi All,

Well, I’m back on the treatment table again - my Low Grade Follicular NHL has come back and I’ve started Bendamustine and Rituximab. So far so good (lumps have already started to reduce). I’ll let you know how I get on!

My story so far:

  • Nov 2011, suspected something was up!
  • Jan 2012, diagnosed with Low Grade Follicular NHL - stage 4
  • Jan 2012, started RCHOP
  • Feb 2012, lost my hair (hair is overrated anyway ;-p My morning grooming time sped up no end)
  • June 2012, finished treatment - full remission - spent the next year full of beans
  • Nov 2013, Low Grade Follicular NHL confirmed back after scan and biopsy. Started Bendamustine + Rituximab

Hi Trevor, sorry to hear that. It’s a blow I know, but stay strong.
My Follicular NHL came back last year, now on Rituximab maintenance. Did you have maintenance therapy after the RCHOP?
Good luck with the treatment, and here’s to you feeling full of beans again soon. Hope you keep your hair this time!
Will be interested to hear how you get on.
Kath

Hi Kath,

Yes, I was on Rituximab maintenance after RCHOP - every two months.

From what I am told, I will probably not lose my hair with Bendamustine - so I’ve continued to stock up on brylcreem!

There’s talk of having a SCT after I finish with the Bendamustine, but I’m still waiting for a referral with the SCT consultant before I know more…

What is next? Pet scan Thurs. maybe an aggressive component

My mother was diagnosed with follicular lymphoma stage 3-4.
She originally went to see her local GP about a lump in her neck who sent her away with some anti-biotics. Months later another GP sent her to see an oncoligist and after tests it was confirmed she had follicular lymphoma.
A Lump in the neck and stomach with a couple of small ones in the chest area. She started R-CVP straight away and after 2 cycles with no effect she has now had 2 cycles of R-CHOP with the 3rd due next week.
We are concerned that R-CHOP might not work as it should because we were told that after the 1st cycle the lump in the neck should vanish but it hasn’t and up till now the lump has gone done but not fully. Has anyone experienced something similar to my mother?
We are also considering a 2nd opinion but just not yet as my mother is a little weak.
There has been mention of dhap and also stem cell transplant.
Is there anyone who has had a transplant for follicular lymphoma? Or even had dhap? What other options are there for my mother?
The reason why am asking on here is because I would like to know from people who have real life experience of this.
I would really appreciate some advise.
Thank you

Hi I have high grade non Hogkins lymphoma and all the pains and night sweats together with swollen lymph nodes. So worried about what is next in store for me. Rchop was so awful, does anyone know what could be next or info on their stories?

What type of lymphoma, I go back today as feel I have relapsed in a bad way, so worried about the next step.

Hi Bizzy,

Sorry to hear you have relapsed. I agree that rchop was not nice - I was worried about that too when I relapsed (i.e. what kind of side effects would I get from the next treatment). As it turned out, I was given Bendamustine and the side effects were not as bad at all. A couple of days of feeling grotty after each treatment, but it worked very well. Added bonus was my hair did not fall out (which I believe is very common with Bendamustine).

Best of luck with your treatment.

Trevor.

Well, here we go - after a good course of Bendamustine to put my Follicular NHL into remission again, I’m heading down the Stem Cell Transplant path. It’s autologous, and I’ve already successfully harvested my stem cells. The transplant chemo starts this Friday (BEAM). I’ll be back in a couple of months to let you know how it went…

hope it all goes well and you are in and out quickly

Hi to after 18 months got lumps back it came back ad more treatment temper went a way carne back now trialling new anti cancer drug at CHRISTIE hospital in Manchester after three weeks I was in remission I trial ed it to give other people hope hope this helps Doug

Hi Doug,

Good news. What’s the name of the drug?

Trevor.