Overwhelmed

Hi Spring2021

I have completed 6 cycles of RCHOP - with 3 intrathecal methotrexate as I have grade 4 disease - I recently had my PET scan post chemo and all is good - so keep the faith!  Because of my risk scores for brain lymphoma it is recommended I have 2 sessions of IV methotrexate.  I too had tears, anger, disbelief, frustration, how do I tell people.  I then got what I call my ****it bucket! all my negative thought went in there - they surfaced but went straight back in it - helped me!  I put my big girl pants on and got on with it!  I was relatively lucky side effects were not too bad - taste changes, gut changes, lethargy, etc. but all got better in-between cycles.  I am 62, (relatively fit), post chemo I feel stronger every day and once I have my second COVID jab - i will have the final 2 sessions of IV methotrexate.  

Knowledge is key - get your nurse specialist contacts and speak with them - very helpful I found.  If I had to have a cancer I would choose a curable one - I have a 70% chance of cure now post 6 cycles of R-CHOP - I will take that.  Life perspectives change when you are threatened we all cope in different ways, I suspect there are a million and one ways- none are wrong!

Keep the faith, I wish you well and hope that you get to feel better very soon.

Irene

Hi,

Thank you for your message.  It sounds very similar to what they are proposing for me.  With perhaps some radiation as well.

I am  pleased to hear you found it manageable.  

Now that I have more information about my scans I think it will help me.  I will of course be waiting for the results of the lumbar puncture but I think I have accepted I can’t change anything so I just need to keep as fit and healthy as I can, keep busy and hopefully keep a positive mind set. I’ve always believed that if someone tells you you are ill you will behave as if you are. So when I feel well I need to tell myself that.

Thanks for reaching out. 

Hmmm. It’s interesting that you had severe back pain - I also did for weeks and weeks before my diagnosis. It started in my lower back - which is not unknown for me as I’ve slipped discs in the past and have occasional lower back flares - but then moved to my mid back and under my shoulder blades which was excruciating at times. 

Interestingly ALL the back pain disappeared with my first chemo (which was R CHOP). My doctors theory is that the mediastinal mass was pressing on a nerve in my back. I have since then had one day of more mild upper back pain at the end of my chemo cycle, which is I think when my mass starts to expand again. I’m back in for chemo cycle 3 now and the mid back pain is gone and lower back pain receding. So I’m pretty sure it’s caused by the lymphoma in one way or another, but their explanation of the mass pressing on my nerves makes sense to me. 

I have a PET scan in a month after my 4th cycle which should give me a better level of detail as I only had a CT scan before starting treatment due to them needing to put me on steroids (which would have muddied the results for a PET scan). 

My experience was that by cycle three just about all the symptoms I had pre treatment had disappeared. What was left was the effects of the chemo. You learn methods to deal with these as you go along. While everyone says to keep to a healthy diet if you just want to munch chocolate or whatever that's fine. I got through a lot of ice lolly's and chilled juices.

In hindsight I should have made more of the support services that are available but with starting my treatment April 2020 things were a bit up in the air due to Covid.

I could see on the scan yesterday where the mass in my spine is and the MRI showed it was pushing on the spinal chord. They think my back pain was a combination of that and also the spleen.  

They did the MRI because I developed pins and needles.  I then went into hospital to be monitored over night.  They took the biopsy the next day and immediately started me on steroids.  The pain was gone within hours of taking the steroids (dexamethasone)  And I took those for a couple of weeks before I started chemo.  I then swapped onto those other steroids as part of the P in the RCHOP. 

Now I’m on the reducing dose until chemo 2 and every day trying to work out if the pain is coming back due to the lower dose but I don’t think so yet.

Obviously I am worried that it pushed on the spinal chord and therefore it might have penetrated the central nervous system.  So waiting on the lumbar puncture results but if it has then yesterday’s chemo into the spine is hopefully the first step at also tackling that.

I can relate to your comment about surgeons getting a bit knife happy.  I have the added complication that the cancer has led to a rectal fistula.  I won't go into the gory details, it is not pleasant but now manageable.  Having spent some time discussing and agreeing my treatment ( with the fistula as well) with the Haematologist and the Oncologist who have been working together on my chemotherapy and radiotherapy alongside the radiologist,  I thought all was planned and ready to go ahead.  Out of the blue I had an appointment with a colorectal surgeon who I had not met before and at a different hospital who then raised concerns on the risk of radiotherapy and ongoing effect on the fistula, who was talking about a temporary stoma before radiotherapy would start.  I was a bit put out by this and upset for a couple of days.  Thankfully he consulted with my Haematologist and the radiotherapy has gone ahead.  The oncologist was concerned enough to seek me out at one of my appointments to discuss my treatment and reassure me that the priority was getting the cancer under control first and then remedial action on the fistula second.  I don't think she was impressed with the surgeon.  

Hi Spring

You are welcome to read my story from 2017. Just a pre warning I've had a lot.of treatment  I'm in my 30's.

I can relate to that feeling I felt completely numb when I was first diagnosed.

I can only say what I would of told myself a few years ago. Treatment can be tough it's amazing you have all the support around you and that will help get you through. I felt a lot of fatigue with rchop but by time I got to second week got my energy back. I also didnt have that many other side effect. Main one for me is hairloss Hair loss was awful but I've learned to accept myself with short hair now.

Take each day at a time.

I didn't do this at the time but seeking help perhaps counselling over the.phone was helpful. It really helped to speak to someone impartial who I felt comfortable with. It may not be the right time for you now but I know nhs waiting lists can be long so bear this in mind for future.

If you have a local Maggie's centre near you or you have access online, they are an excellent resource. I only discovered them last year.  With covid a lot is virtual. you can do online yoga meditation and they offer psychological and financial support. They have been a life saver for me since first lockdown and a place before covid to get away from the hospital.

 I did relapse but a new trial genmab a small study got me back into remission and I really.hope this will eventually reach the stage where.it is available on the nhs as it saved my life when intensive chemo didn't do the trick and side effects were minimal for me.

Last year I had my donor transplant and have been.in remission for almost 9 months since end of my genmab trial

I really hope this gives you faith there are options there hopefully you won't have to go there. 

Unfortunately I know a lot about this type of cancer and hope detailing my journey will help others. My new blood type is B and my sister's phrase to me was always be positive. 

Wish you all the best with.your treatment. 

Alice x

so I could of had 

I'm a year out from finishing R-CHOP, so I'm familiar with where you've been.  

If they have planned to give you intrathecal and IV methotrexate, they will do that regardless of any test results.  It's insurance against there being any undetected CNS involvement present.

It was planned that I would have 4 lumbar punctures while I was having R-CHOP, but I had a nasty reaction to the second dose of intrathecal methotrexate, so I only had 2.

I did have 2 courses of high dose methotrexate after finishing R-CHOP.  Each required me to be in hospital for 5 days, and it was tedious to say the least.  They super-hydrate you to protect your kidneys and every wee must be measured and have the Ph tested.  24 hours after you're given the methotrexate you are given folinic acid to reverse the effects, and you can't leave hospital until your methotrexate level drops enough.

Reaching the end of R-CHOP and realising I still had 10 treatment days ahead of me was a huge hurdle for me.  That was more days than R-CHOP itself took and at least I got to go home after each R-CHOP session.

I'm sure you've been told by now that DLBCL can be cured at any stage.  It's hard to wrap your head around that in the beginning, but blood cancers are different to solid cancers

Once I started R-CHOP, I had no scans until 6 weeks after the second lot of high dose methotrexate.  That was a PET but now I just have a CT scan every 6 months and bloods done every 3.

I no longer think about cancer every day and the restrictions on my life now are due to covid rather than cancer.  I haven't found my "new normal" yet, but I'm certain I will get there.

Hi there,

Thanks for your message. My first lumbar puncture was clear so that’s good.  I think the plan remains similar to yours though, that’s fine.  

Whilst I don’t want to stay in hospital I have to say when I was there for 2 nights as part of the biopsy the set up was great.  They have individual rooms and the staff were great. Even the food was edible! I live on my own so am used to my own company and have spent the past 20 years travelling the UK and overseas for work so to stay away on my own won’t be an issue.  

The treatment might not be fun, especially if you have to test every wee but if it works I’ll do it. Thanks for the heads up on what it involves.

I think side effects wise I’ve got off pretty lightly with chemo 1.  Hopefully no 2 scheduled for Thursday will be likewise but I accept the effects are cumulative. 

Sounds like you are doing well. Long may that continue.

Thank you.  

Sounds like you’ve really been through it.  I hope your good health continues. 

I am in a better headspace now. I think positive thinking is the best medicine.

My hair, lockdowns apart, is normally short. So now that it’s hardly there has actually not been a worry for me. I’ve got 3 really good wigs and fake me actually looks better than real me

I’m reminded every day obviously but at the moment it doesn’t fill my every waking day. I’m still able to work from home. I’ve only had 2 days where I’ve felt fatigue and that was only for a few hours both times. Not once have I even felt remotely sick. I am nervous that round 2 later this week won’t be such a breeze.  If I can keep the sickness at bay then that means I can eat well and then I’ll have enough strength but we’ll see. 

Your story brings hope though even if things don’t go to plan.

Look after yourself.