Non-Hodgkin lymphoma

Affected by NHL? Join this group to share experiences and ask questions to people who understand what you're going through.

Finally nearing a diagnosis

johnr
Posted by

Hi, don't want to put a damper on treatment but keep an eye on those spots as if you have an infection treatment may be delayed, however as its your first your immune system is still normal, its after the first hit it starts to take a nose dive.

Minty61
Posted by

Thanks for the warning John. I haven't had any other symptoms so it's just precautionary and I let the haematology team know. They think I should be OK to get started on Wednesday and hopefully it will have cleared up by then. Really grateful that my GP for acted so fast.

Minty61
Posted by

Hi Lynda

Thank you for all that good advice. No, apart from the antibiotics from my GP I haven't been given anything to take yet. I've met my consultant re diagnosis of course and she's lovely. I do have name and extension number for ward but not met anyone else yet. So although  I've been given a print out re R-CHOP and useful booklet re high grade NHL that's about it and I've  not had opportunity to discuss anything about chemo, side effects, hair loss  etc or what's available in hospital or local area support wise. I'm meeting key worker nurse on Tuesday, the day before treatment. I've made a note of the drugs you mention so that's really helpful. It sounds like your hospital and team had been a bit more proactive with support by this stage! Fortunately I've had this forum and yes, Mike, I will spread the word!

hugs 

Minty x 

johnr
Posted by

Hi, its normal to leave the day ward after treatment with a bag full of drugs, some you only take for a short while when treatment first starts and the rest you get for all cycles, the pre treatment meeting is normally the point when lots of info and advice is given.

Having your list of questions is great and one to add if its not there is does the care team at the hospital take over responsibility for your general health mine did or ask what role the GP plays from the start of treatment until the end, over recent years this has varied to so best to know.

John  

Minty61
Posted by

Well plenty has been going on here. I didn't start my R-CHOP on my planned start date yesterday. I had mentioned the ACCEPT trial to my haematologist the day I had my DLBCL diagnosis 2 weeks ago. Although she admitted she hadn't heard of it she looked it up there and then and contacted one if the research nurses at the hospital running the trial which is 20 miles from where I live. At that time I was stage 1 with a 8.6cm bulky mass and just out of criteria. Following my PET-SCAN and change to stage 2 she contacted them again and research consultant agreed to see me on Monday this week. After my consultant had read more about acalabrutinib she felt it might be worth at least finding out more but also told me about the additional tests I would have to have and time these could take. I was really clear that I couldn't afford the risk of a further wait for treatment started but went along anyway not expecting it to come to anything and with start day still in place at local hospital. The consultant I saw who is an oncologist and who specialises in lymphoma and research was brilliant. He explained the trial really clearly. Basically I would have 6 cycles of R-CHOP as planned but start taking this drug (a second generation BTK inhibitor) from second cycle. You take it for full 21 days and then for a further 2 cycles once R-CHOP has finished. As the trial is in its early stages they can't be sure but the aim is to improve long term outcomes and reduce recurrence for relatively small group of patient with DLBCL who don't respond so well to R-CHOP. I might it be in that group but feel its worth it. They are getting all the extra test done which included another CT and bone marrow biopsy yesterday and echo cardiogram on Friday. Then clinic Monday and start first cycle of just R-CHOP next Wednesday. 

Feeling like it all a bit of a whirlwind at the moment and partly that I'm complicating an already very challenging period of treatment. However I also don't feel I can let this opportunity go. It's not for everyone and I'm likely to have additional side effects for longer but for me it's doable, not too far away and I feel I'm accessing the true expects. 

Minty 

Thehighlander
Posted by

Good morning Minty well this is a turn up for the books but it sound like a plan. As long as you have all the details that are available and confidence in your team then go for it. 

It shows the importance of finding out all the information that is out there and asking the questions. Lots of Consultants find it hard to keep up with all the developments basically due to not having the time to research and keep updated.

Highlander ((hugs))

johnr
Posted by

Hi Minty, from the way you describe it it sounds like a blind trial which has two arms, one gets the treatment and the other one does not or gets a placebo. I doubt from how you describe your lymphoma that a week will make a difference, though I know when we are all at the starting line we just want to get going. If you do get into the arm that has acalabruntinib it should make the chemo more effective as they are starting to run trials where they are adding ibrutininb to other regimes for transplant patients as it seems to make the regime more effect, the current trials have been withe r-ice or ice. 

Without people being willing to go into trials then they would not be making advances in how better to treat the various types of lymphoma.

Thumbs up for giving it a go.

john

Minty61
Posted by

Hi John and thanks for the thumbs up! It's not an altogether easy decision because there are likely be more side effects, no guarentee of improved outcomes and more testing/hospital visits. 

This is my understanding: acalabrutinab is the second generation of BTK inhibitors which should have improved on and reduced the side effects of ibtutinib. 

I'm lucky because this is an interim stage of the trial. They have already tested for the optimal dose  and want to run this with 15 more patients before the main stage which as you describe will be the blind trial.So I know I'm getting the acalabrutinab which is really great news.

I  believe this is the first time they have tested acalabrutinab with R-CHOP and for DLBCL. Think it's been used for other lymphomas including MCL but not as first line treatment.

For me there's still a question mark over the quality of the tissue sample they managed to get from my second biopsy. So everything crossed that I actually get accepted because after lots of confirmation I'm definately up for it. I'll keep you posted

Take care. Hugs 

Alex 

johnr
Posted by

What would be really good is if they did did genomic profiling of the biopsy and then they could see how the profile compares to the 4 new sub types that have been identified and then how the treatment worked with your profile. All clever stuff at present, fingers crossed you get it and I do believe from the trials done so far the side effects are not as severe. 

John 

Minty61
Posted by

Hi John

I wouldn't be surprised if that's something they are doing with further analysis of the tissue sample. I might ask. They probably won't expect me to be so well informed but thanks to you I'd read the research. I'm GCB but know there's a subgroup that don't respond well and it's not as clear cut as GCB good /ABC not so.

Been in and out of hospitals all week but extra tests completed now including BMB and I'm starting first R-CHOP on Tuesday. Just have to wait to hear if tissue from biopsy of main mass is good enough. I'm going to be really disappointed if I'm not accepted now! 

Minty x

Minty61
Posted by

So R-CHOP start tomorrow not Wednesday as I had been expecting. Full marks to new team for getting my CT, BMB, EchoC and ECG all done in less than a week. Its taken just over 2 months to get to this point from my first CT. It was a bit of a shock to see the new CT which shows main mass has grown quite a bit and explains all the pain and need for Tramadol. Not surprising really and I now I know I wasn't imagining the changes I was aware off. Immediately put on steroids and given morphine today by new consultant. Steroids helping already so haven't had to take morphine yet. I think both Mike and John suggested I asked my last team about pain relief including steroids but was told Tramadol was 'pretty strong stuff' and should do the trick. 

Still awaiting news of tissue sample to confirm I can start trial and Acalabrutinab at second cycle. At the moment i just want to get things started! May not get much sleep tonight as didn't get and start Prednisolone until after midday.

Minty

Thehighlander
Posted by

Big Highlander ((hugs)) Minty and let's look for your first treatment to go smoothly and you end up thinking was that it?..... but just in case, your team are not mind readers and the call button is for s purpose even if it totally annoys everyone else in the room ;) xx

johnr
Posted by

Hi, like Mike, hope this first one is straight forward and don't worry if you react to rituximab, I will always remember telling friends that the first one was a walk in the park and I they were all like that I would sail through treatment. 

We are here to help as much as need now treatment has started

john

Katy Lou
Posted by

Hi Minty. How did yesterday go. Was it as you thought it would be..? Hope you are feeling ok and got that awful unknown feeling over. I had my second one yesterday. Only there one and half hours. Much better than the first and so far no stomach or vomiting thank goodness. Now wearing my little hats most of the time. Quite comfy the ones made from bamboo. Sending you lots of hugs. Been thinking of you. We will both do this xxx

Minty61
Posted by

Hi Katy Lou

Really good to hear you are doing much better this time. 

Yes it is good to have got through that first day and as you say the unknown. Goodness yours was quick yesterday! I think I was in the chair for close to 8 hours. Had a bit of a reaction at 3rd increase of Retuximab and so that put things back a bit while I had some extra steroids. Apparently that wasn't unexpected with my bulky mass. Fine after that fortunately and was surprised how 'normal' I was feeling when I left. Nurses were lovely and very reassuring. Did discover I had missed all the pre chemo info because of the transfer to another hospital but they were then able to take me through things. 

Had couple episodes of hiccups a couple of times last night which an unexpected extra! My brother whose daughter had HL said that was probably one of the anti sickness drugs and yes I see it listed as a less common side effect. Amazed that I slept last night which was good. Not feeling so great today with nausea but fortunately no vomiting. Also drowsy and don't feel think eating much- taste definitely changed. Still all doable and good to be on the journey to recovery at last. 

Haven't got the bamboo hats yet but hear they are comfortable so will get some. 

Sending lots of hugs to you too and do hope continue to feel better this time round

Minty