Hi,
My partner started Rchop chemotherapy started last week for large diffuse B cell lymphoma.9cm mediastinal mass found in March which had also spread to lymph nodes and spleen stage3 with b symptoms present. ( weight loss, night sweats, fatigue)
SVC obstruction due to mass pressing on (superior vena cava) this was causing visual disturbances, pressure in the head, swollen face, head,neck and upper body. Meaning my partner can only sleep upright and has done for 3 months now. This has also caused my partner to faint.
After his first chemo last Thursday we went to hospital on Sunday due to a infected wound from the 3rd biopsie where they had to collapse a lung. They did a scan function ding there was also a infection on the lungs but more importantly showing that the mass has significantly grown since April despite prednisolone 100mg daily for a few months ( partner had 2 failed biopsies both ct guided and ebus.
The scan shows the increased size of the mass now means that the svc is now completed squashed/compromised and also has a large blood clot completed blocking the other side too. It also shows fluid around the heart which is also now due to the size of the mass that has grown bigger putting pressure on the heart. We do not have a new measurement for the new mass size unfortunately they could not give us this.
A histology report we have in hand for holiday insurance however gives a diagnosis of ebv+ large diffuse B cell non Hodgkin lymphoma.
The ebv + has never previously been mentioned to us. Does this change prognosis? Has anyone else had this? Does anyone know of any trials for this particular aggressive form of lymphoma?
Iv heard people mention immunotherapy being good but then I thought he’s getting this with r chop?
Iv also read a article about something in London called the bullet? Has anyone had this? Did it work?
Thank you in advance im eternally grateful x
Hi and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear about your partner.
A cancer diagnosis can bring a lot of stress on a family but talking with people who are on the same journey will help a lot and will help reduce the whirlwind wind that is rushing in your head.
I have lived with a diffrent type of Non Hodgkin's Lymphoma for over 20 years so do understand some of the challenges you and your partner are facing. In fact it took over 21 months and 6 biopsies to get the clear proof of my rare condition.
It lived for a good 14 years with the condition before it became aggressive, but once it did it moved fast and I too was sitting up all night with great difficulty breathing (see my profile)
We have a dedicated forum covering Diffuse Large B-Cell Lymphoma so follow the link and join the group as you can connect with people on the same journey.
To do this hit the ‘Join the Group’ tab just under the main group name. At this point go to the right on the group home page and select how you want to receive email notifications when someone answers your posts.
The best way to get support is to go to the 'Start a Discussion' tab just under the main group name. Set up your own Discussion and Introduce yourself to the group - you could just copy and paste what you have in this first post.
Have a look through our various Macmillan Support Line Services then call them on 0808 808 00 00 to be very helpful covering Emotional Support and Practical Information. Clinical Information and Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
We are around to help as best as we can.
