Looking for information and support with rarer Diffuse B Cell sub-type - "T-cell / histiocyte-rich large B-cell lymphoma"

Hi Mike 

Looks like the filgastrim is a saviour when neutrophils zeroed. I am having it every other day, my problem is I have lost feeling in my finger tips and can't get the needle cover off, my wife Wendy pulls it off then I'm okay lol.

Allan 

The Chemo finger (Peripheral Neuropathy) can be a true pain.

I was given a couple of small hand sized rugby balls and I sat most of the time working my hands/fingers and getting the blood circulation going - I don’t actually know if it made any difference but once treatment was complete all came ok so I suppose it did but it keep my hands active.

I was talking with someone at the start of the week about their chemo finger and I said I was actually “happy to have had it” she had a questioning face so I went on to say that “chemo finger, numb feet and headaches reassured me that the treatment was reaching every part of my body where the bad cells could be running and hiding in”

Just to add here that I wasn't told to avoid any foods. All hospitals are different it seems, some don't think it's necessary, so don't worry too much if you're not told these things.

Londoner, I do find that a surprise as when the team had the talk with me they also explained why, some can actually counter the treatment and others increase the risk of infection when your immune system is at its lowest. 

My advice would be different and it would be ask the question about foods to be avoided so you get it from the team, as I know protocols are constantly evolving. In reality its all about risk assessment and how best to manage lifestyle during treatment.

Indeed, blood cancer treatment centres can be so different and from talking with lots of folks stuff like food safety is not seen as an issue  or can be overlooked by our busy NHS staff.

Yes, for a good percentage of people the food issue will not crop up but for others who have very low counts, age, other medical issue it actually can be very dangerous.

Folks will often be given lots of information but a lot of this is often left on a table and never looked at.

At my two hospitals - in different regions in Scotland, we meet with a dietitian before, during and after treatment and was clearly told about the ‘bad’ foods but also about what was good to eat during treatment and post treatment to build me back up.

There are obvious foods and how food is handled that can be a problem even for a well and fit person....... so some common sense is needed.

We were very carful but in the early days, in the middle of my 6 chemo cycles I developed very bad Helicobacter Pyloria a bacteria that developed ulcers and stomach inflammation…… most likely one of the wort experiences ever.

As far as we can figure out a friend brought some shopping round for us - so kind. Then the following day it all kicked off…… this included my wife complaining about having the runs………. We eventually found out that some of the meat had been bought from an uncovered deli meat stand in a supermarket…… was it the cause - who knows? The friend may have had a bug, but it did raise our awareness that during treatment it was not worth taking any risks.

If in any doubt talk with your Specialist Chemo Nurse.

Hi Mike and John,

Hope all is well with you both, it's been all go my end.

So dad had his first R-CHOP on the 22nd and no reaction which was good. He felt good the first week and a bit (other than initial tiredness on treatment day) but unfortunately got brought into hospital yesterday with a neutropenic fever (I think this is what they said it's called). He's feeling better and will be in until Monday be think - glad he's being looked after and pleased my mum spotted the signs (he was shivering and had a high temperature). The consultant said this very common with R-CHOP, even on cycle one and can impact some people on multiple cycles. He also said in some cases they worry if the counts don't go down as can mean the chemo isn't doing its job.

Wondered if you have any experience with the above? You both seem super knowledgeable. Also they have said that dad's platelets are low (42), so are white blood cells, calcium and magnesium. Are these fairly common things?

Oh and he's getting cramp in his hands a fair bit too!

Wishing you both a good weekend!

Hils

Hi Hils, good that your dad got through his first hit but sorry to hear that he has had some bumps in the road so early.

The thing you have to understand is that you have to expect the expected....... for some, these issues can be the norm but let’s hope this is a one off.

Has your dad had any blood transfusions, this did happen to me on a number of occasions as the chemo can hit the immune system, so yes, is normal to see counts go low post treatment.

He is doing good, you are doing good. Your mum did well to recognise the shivers and temperature, these are the telltale signs I have leading up to an infection.

((hugs)) 

Hi Mike,

Sorry I didn't reply sooner, it's been a really rough couple of weeks and I won't lie, I'm struggling to stay strong and positive today - tears a plenty (awful really when it's dad that is the one going through it).

All within the first cycle - we thought dad was over the worst having been discharged after the Neutrapenic Sepsis but then over the weekend we had to go to A&E three times as he had a fever and confusion (was so scary). We saw the consultant yesterday morning and she said there is no sign of sepsis. There a slightly elevated levels of infection but no obvious source. She said it could be the lymphoma itself causing the non-neutrapenic fever and suggested we keep an eye at home and only bring him in if we're worried or there is delirium etc again. It's really scary as temp is getting up to 39.0 at times and as you can imagine we're frantically checking and watching. I accidentally fell upon an article today when googling NNF as it said if people who have neutrapenia / infections have chemo have a lower os rate and it's really knocked me - think because I'm generally just feeling low / neurotic.

I'm trying to cling on to some more positive news, he had a brain and spine MRI as has been wobbly and the mass is near his spine and that was clear (big relief). Also the consultant we saw (wasn't our usual one) said that the MRI showed the lymph nodes have shrunk, the main mass is smaller and the bone marrow is almost back to normal. Am I safe to take this as a good sign or is this always the case / or perhaps the steroids? I was on such a high yesterday and then so low today - maybe just reaction to the traumatic weekend.

Apologies for the waffle, I didn't know where else to turn today and feel better for just getting it all written down.

Hil

Hi Hil, I have put a reply to your new post.

Good news that his MRI is good and the lymph nodes are reducing so a big YES that this is very good news and positive progress is indeed being made.

This is a hard time - we remember this so well but it is important to keep looking at the goal, the medical stuff you can’t control but the battle between your ears is the one that you must control.

((hugs))

Mike - you deserve a medal, your words, although written, are so calming.

Glad you agree it's good news.

The battle between the ears has had a slight victory these last few days but I will fight it. I was also just reading on the Lymphoma action site and it mentions the below so I guess this is what dad might be experiencing. What seems weird is that it's after the chemo has started:

Fever is a rise in your body temperature above the normal level. It is almost always caused by an infection, but there are a few other much less common causes, including lymphoma.

Lymphoma causes fevers because the lymphoma cells produce chemicals that raise your body temperature. Lymphoma usually causes mild fevers – a body temperature over 38°C or 100.4°F. These are described as ‘low-grade’ fevers. They usually come and go.

Thank you!

Hil