Bad News from Follow Up Scan

Relapsed or refractory lymphoma
#1

Just received the results of my follow up scan after 6 cycles of ABVD for Hodgkins. The last scan after cycle 4 was a little unclear (the staff doing the scan that day were awful, they kept on leaving the door open and didn’t give me a blanket so I was freezing), and gave a false impression that everything was gone. The new scan shows there are still two small areas, one in the neck and one in the lung, and that further treatment is needed.

My consultant is still checking out which option is best. Either radiotherapy or R-ICE chemotherapy with an autologous transplant.

I had kind of a bad feeling for my appointment, I’ve been getting all over itching for a couple of weeks now so I already had the thought in the back of my mind that it might be back, so it wasn’t a complete shock. Just feeling numb at the moment, not sure if I’m really processing it properly or if I’m in denial? Really not looking forward to telling family and friends, I’ve been telling everyone that treatment is over.

#2

Hi, really sorry to hear that its back or never quite went away, the are a few options for treatment, you might want to suggest they get a second opinion from The Christie at Manchester and Dr Radford, he and is team are one of the best in the country and its ranked 5 in the world for cancer treatment. Also on the macmillan site the is a stem cell transplant group where the are others like Elena who posts on here to, who’s firstline failed and they are heading towards SCT. So you will get lots of support and advice which will be helpful at this time as they understand and have stood in your shoes, so to speak. here is the link, cut and paste it into the address bar to get there.

http://community.macmillan.org.uk/cancer_experiences/stem_cell_transplants_for_blood_cancers/

good luck and hope you get some answers soon, have they said when they may have a recommendation?

john

#3

I think they said they would get back to me in a few days, after speaking with the radiology department. It was one of those clinic meetings where I just couldn’t concentrate and take in everything they were saying. Consultant said he was writing a letter to my GP, which I’ll get a copy of and will have all the details written down for me.

Really hoping it can be treated with radio, sounds so much easier than getting a transplant. I’m 24 so technically a young person, and they have to consult everything with the nearest child and teenage specialist hospital in London and get a second opinion that way. They said that if it is a transplant, I’ll have to have it in London.

#4

Hi, I don’t want to add to your worry and hope they are giving you all the information you need to help make an informed decision. have they made you aware that radiotherapy to the chest - lungs has a risk associated with it? My understanding is that is a risk of secondary breast cancer around 15yrs down the road and when you make your decisions its about balancing the risks that both treatment options bring.
Whilst I understand consulting with the childrens hospital, my experience is that consulting with the top experts is what is best, so so long as the London hospital has those experts great, if not push as its important.

Do think about using the Mac site as the is a lot of experience there, more than we have here.

john

#5

Hi there,
I’m really sorry to hear about your relapse… I believe I am in the same boat as you. I was in remission from Hodgkins, in my neck and chest… And now at my check up blood work was not looking good so next week I go in for my CT scan to find out it is back or not which I am sure it is… I have been having itchy all over feeling too but that undeniable gut feeling of relapse is my present too. I think we all tend to know when something is not right. I am also sorry that you had such a bad experience with your scan… what idiots! Obviously they have never had cancer! I hope the best for you! Please let us know how things are going! Best Wishes, Rachael

#6

Sorry for not replying earlier Rachael. I haven’t been having a great time, Brentuximab didn’t work anywhere near as well as I’d hoped, but trying Bendamustine now and my lymphoma symptoms are disappearing again so hopefully I’ll be able to go for a stem cell transplant around New Year.

Did you find out what your results were? Hoping it was a false alarm.
Cog

#7

Sorry to hear your situations. However, I would keep positive.

I was diagnosed with both NHL and HL in 2009. I had intensive chemo with Autologus Stem cell Transplant in 2012 followed an unsuccessful ABVD in 2010. For the last four years, I had pretty good run with remission and building my physical and mental strength.

Unfortunately, I found a lump 2 months ago, and yet to be diagnosed. Biopsy and CAT scan couldn’t find anything. Waiting for PET scan.

Between 2009 and mow, since I first diagnosed, treatment prognosis improved with better medications.

Chances of all of us surviving is much higher now. In my experience, for a short while cancer impacted negatively on lifestyle. But, since then I have learned who and what are important in my life and I am much wiser and stronger person.

Mani