Hi All, I don't really think blogs were around the first time I had cancer in 2001?!
I was diagnosed with Hodgkin's lymphoma at 22 years old and had 6 months of ABVD then all clear for 19 years. I went on to have 2 children. In 2019 I was diagnosed with NLPHL, I lit up like a Christmas tree on the PET scan and had 3 cycles of R-CVP. I had a great response to this and the follow up PET scan revealed no clinical evidence of cancer so treatment was discontinued. This also coincided with COVID which is why I had the PET after 3 cycles as opposed to 4. I had no symptoms of NLPHL other than tiredness looking back, it was an incidental find. In February 2021, after another unrelated medical test, I was advised to have another PET scan which I had last week. It revealed abnormal lymph nodes and nodules in lungs. Had a biopsy yesterday to confirm diagnosis but may need a lung biopsy in 2 weeks if not enough lymph node sample taken.
No point in getting angry, it won't change anything and much worse things happen. I just find it frustrating that as we all come out of lockdown I'll more than likely have to be stuck indoors more than I like. I've just gone back to work after "shielding" , I like my job and just want to carry on with my life like "normal".
I am wondering what the next treatment option could be after R-CVP? My veins hate being pulled about and so I am thinking of trying a PICC line this time? My hair is back and I'll probably lose it again.
I have never been on a forum but I did find it really useful about what to expect with R-CVP so if anyone has any questions, or finds themselves in a similar position, it would be nice to help/get advice.
Hi and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your HL relapse especially after such a long time.
I am Mike Thehighlander and I help out around our blood cancer groups. I diagnosed way back in 1999 with a rare skin NHL it it took me 17 years to find remission - that’s blood cancer for you.
The Community is organised into cancer specific support groups so can I recommend you join our supportive Hodgkin lymphoma group as this will be a good place to connect with patients and families navigating the same type of cancer treatment journey.
There have been a number in the group go on to have R-CVP followed by Stem Cell Transplant but a good question for the group.
To join a group just click on the link above then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens.
You can then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
I will keep an eye open for you in the HL group.
