Low grade extra nodal marginal zone lymphoma recently diagnosed

Hi again Elaine  and good that you have navigated over to our little corner of the Community.

From your profile it looks like you have been on the cancer journey for a number of years and sorry to hear about your partner Ian....... so unfortunately you know your way around the Community.

Coming from a science background will will have a better appreciation of the complexities around typing Lymphoma and the importance of finding the very best treatment for how it presents....... but it can take much longer than you would hope or even imagine to get this information.

There is a balance as to using Radiotherapy (I had 45 zaps) as once you go down that road you then start to cut down future options especially with a big mass in the Lung and the damage that Radiotherapy can do.

A lot of the chemo and targeted therapy are very effective and don't have the side effects that were headline new of the years.

You will know that blood cancers like Lymphoma is a completely different beast for other cancer like the stomach cancer Ian had....... and on the whole blood cancers are very treatable, yes hard work with some of the treatment plans but do-able.

As I said in your first post there are a number of folks with MALT so lets see if they are still looking into the site and for them to pick up on your post.

We are around to listen, support and for you to let off steam if required - keep us up to date ((hugs))

Thank you Mike for your reply, found the  MALT link information most helpful. 

Hi Elaine, the start of your story sounds very similar to mine. Had reoccurring coughs & colds from Christmas 2019 which I put down to low immunity due to stress of trying to move house (which fell through several times). During house move felt very tight chested, difficult to get full breath plus lots of hot flushes, again put it down to stress & anxiety. Also carer for my mother who at this time had bad fall so had to look after her as well. Then in April my husband got flu which I soon contracted, but mine was worse. Really struggled to recover, again my lungs & breathing were affected along with extreme fatigue. Then by end ofJune my breathing was so bad went to GP & diagnosed with chest infection, prescribed antibiotics, sent for bloods & chest xray. I got worse, so my husband got me an emergency appointment to see GP.She still hadn't had xray results, so gave me stronger antibiotics which made me vomit. I was very weak, unable to eat, felt nauseous, shallow breaths and had temp of 38.8. 

8:30 am next day, GP rang, said she has xray results, I have double bronchial pneumonia and need to get to hospital asap.  I was treated for this with 3 intravenous drips a day of antibiotics & steroids, followed by more xrays & ct scans. I deteriorated first with heart failure as the fluid on & around my lungs was causing to much pressure on my heart, but I suddenly improved so they sent me home after a week to await PETscan in Poole Hosp the following week. Again I deteriorated after a few days, my pulse rate went up to 130bpm so I was rushed back to hospital again, missing my PETscan as too ill to travel.

Had pulmonary tap to drain off fluid from left lung to send for tests but was inconclusive. One enlarged lymph node under my aorta spotted by doctor after CTscan, several biopsies attempted in back & neck but failed. Was told I'd  have to get worse before next attempt. I did, the lining & cavity of my lungs filled with fluid, so had chest drain in left lung for 11 days, draining 5 litres. Then on my right lung drawing 3 litres. Was on oxygen, steroids & antibiotics all the time. Again too ill to travel for PETscan so missed yet another one. Very frustrating as they needed the pet scan to identify what cancer & treatment I needed to fix me. Really thought I was never going to leave that place. After 6 weeks in hospital finally got the PETscan & diagnosed with Diffused large B cell Non Hodgkin lymphoma. RCHOP chemo started next day. 

Home from hospital after 2 months of being to hell and back. Had 6 sessions of chem, 6 week break now 2 more therapies to go. But still suffering from reduced lung capacity, fatigue and back pain.

OMG what a terrible time you have had, i had appointment with consultant today so hopefully treatment starting next Thursday, got the date today but ive to phone first thing in the morning to make sure they have a space for me, i am fortune that ive not been hospitalised and I hope that continues during my treatment, have always been a fit and healthy person so if i am honest still trying to get my head round the fact i have this disease, I have to get 6 cycles of chemo over 6 months and fingers crossed it does it’s job, want my zen back as the fatigue has been the worst part for me, always feeling that i am fighting something off, I hope that you get some respite during your break from treatment and you build up some strength for the next cycle, you sound like a true fighter and that gives people like me inspiration to take on the battle, take care sending positive vibes your way. 
Elaine 

Hi Elaine. Hope you started your treatment last Thursday and that the side effects not too bad. You might find helpful to stave off nausea with anything ginger. I had stacks of ginger biscuits; cakes; lemongrass& ginger cordial; ginger beer & ginger liqueur.  The various side effects go on, but may affect each individual differently, so don't be afraid to ask for help with any of yours.

I have one more IV treatment left, yay, still get some side effects with this one but not the nausea thank God.

Thank you for the nausea tips, treatment starts this Thursday 6th February, still can’t quite believe this is actually happening to me all feels very surreal, hoping I will sail through the treatment, my sister was amazing with hers, she had chemo and radio for breast cancer, nearly 4 years clear, so hopefully ive got a bit of her character in me, glad to hear your nearly at the end of your treatment and the nausea has settled, i was going to work right up till Thursday but have decided to take next few days to sort a few things out, and so as not to wear myself out too much before Thursday hopefully i am doing the right thing as work has kept me going so far. Take care and I will post how everything goes, 

Good luck with rest of treatment , I’m on Watch wait had 3 illnesses this year but I have till last one stayed away from Dr now I now Why , Phoned for Phone appointment on 20 January 8:30 no call back same Tuesday 21 in end of day called 3 times I knew Monday I needed course of steroids been there before in past with my Asthma but this worst due to NHL Follicular B in Aeorta 

Dr called back when I threatened official complaint said I sounded ok 

wends day 23 got call Sending Taxi as by now to I’ll to get 12 miles on scooter bus scooter to dr Call was 9 Am Taxi 1:45 told me I had appointment 2:15 saw Nurse 3:15 took bloods told me see Dr take bloods with me after for XRay deliver  

Dr had go at me saying cost of complaints against Dr I asked why he said Did not want discuss , 

He gave me examinations & gave me course of Steroids said he ring after I finish Got hospital he had booked XRay for 29 but they did it then & delivered bloods , I was Rough , went home in taxi got call night 23 bloods got problem may be clot , need Dr but one I saw had not written anything down that day , nurse had thankfully she most likely saved my life went hospital I had to get taxi £27 still waiting it back from practice , System with this dr is Done I cannot see him again made official complaint 

had scan , IV And broad spectrum antibiotics I went home next morning son in law drove 60+ miles in mist fog to be with me till 6 am ,then he went to mine to sleep look after my little dog never alone before , Finished steroids Antibiotics , got gland size of apple on neck got my Daughter & another Dr to deal with my condition on phone & Face-time,  I just put phone to iPad let them fix I was to I’ll , , another course of steroids finish tomorrow hope I’m going to be ok First check up since diagnosed 10 months ago is in April no check up nothing ,, I truly am glad your getting treatment you sound tough like your sister I hope your Better soon keep us up to date , best wishes from Purrwoman 

God what is going on out there?the way you have been treated is shocking, 1st check up in April since diagnosis doesn’t seem right at all, so far for me it’s been ok, doctors and nurses all been very good, hopefully It stays like that once treatment starts, I've been through system before when my partner ian had gastric cancer which unfortunately he didn’t survive, you have to keep making sure your voice is heard, i have spent all my adult life working in the nhs so doctors don’t intimidate me, I hope you feel better soon take care and I will keep you posted xx

Hi purrwoman, you are having a dreadful time - these issues just make getting through cancer more stressful.

I think you need to talk with someone to get some guidance and help so please check our various Macmillan Support Line Services - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information and Financial Support mostly open 8.00 to 8.00 but check the link.

Do check if you have a local Local Macmillan Support office in your area or a Maggie’s Centre as talking with these professionals can help unravel some of the challenges you are facing.

((hugs))