Newly diagnosed living in Germany :(

Hi Blunderwoman and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. 

I don’t have DLBCL (If this is the actual type of B Cell you have as there are a number!!) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

I can appreciate how difficult this has been for you and your family but you are ‘up and running’ with regress to treatment and let’s look for the treatment to do it’s job.

Obviously there is going to be differences between the UK and Germany but there will be some overlap.

Do you know the ‘exact’ name of the chemo you are having?….. it may be R-CHOP, knowing this information will help us support you.

In the UK it is normally a Haematologist that most people will see but this link Questions to ask your medical team about Lymphoma will help you get some questions together for your appointments.

DLBCL is a High-grade non-Hodgkin lymphoma so it grows quickly so needs to be treated aggressively but unlike my type of NHL….. the aim of your treatment is initially to cure….. my treatments are only used to put my condition asleep as my type is incurable.

You may experience Side Effects of Treatments but please remember that most people have few problems. Just take each day as it comes and if you are having any problems you talk to your clinical team about them as there are many things that they can do to help you.

In the UK most Lymphoma patients are given a dedicated SCN - Specialist Cancer Nurse (often called a Macmillan nurse) this is our ‘go to’ person in our clinical team where we can call, email or text when we have questions……. do you have a contact person like this?……. these people are an important part of getting through this.

You may also find this link helpful Top Tips for the day of your Chemotherapy

The group will be your ‘buddy’ as there is lots of experience that can help you navigate this journey. You can see some peoples stories if they have put info in their profile (just hit their community names) but you can see my story using the link at the bottom of my post.

I have said enough, have a look at the links and do come back with any questions you have ((hugs))

Hi The highlander thanks for getting back to me. So my type is the B cell lymphoma GCB double expressor. I have had one chemo and it was as you rightly suggested the Rchop treatment.In Germany they out source the oncologist role so that’s who I’m seeing on 2.1 so I wanted to know what to anticipate, what questions to ask etc. I would then be enrolled in second to sixth chemo cycles back at the hospital. In Germany as far as I know, you don’t get a specific nurse but rather four specialists who will handle your case amongst them. This is why I joined the Forum in case there were questions I later thought of or needed to translate. That’s as far along as I am. 
thank you for sharing your own story and I’m sorry to hear of your diagnosis and prognosis but know that you’re doing so much good supporting folks like me.

thank you 

Hi again Blunderwoman ...... please do call me Mike.

So hidden in this link Diffuse large B-cell lymphoma you are going to find some info about your type..... there is not a massive difference between normal DLBCL and your type..... it just means that yours is presenting slightly differently.

R-CHOP is the initial go to treatment and has been successfully used for over 13-14 years....... the fact that your team are using R-CHOP means that they see it as the best tool to do the job......... you dont say where your NHL is presenting....... some people do go onto have Radiotherapy depending on their presentation. It's all about balancing how much toxicity your body gets.

Please don't feel sorry for me in any way........ I am just happy to be alive and kicking as my type of NHL is very hard to treat.

You will see from my cancer story that I had R-EPOCH, this is the full on big brother of R-CHOP and this had me in hospital for 5 nights/6 days on my two IV pumps 24/7 for my 6 cycles so I had over 750 hrs of chemo and honestly i did ok.....and so will you.

You will also see that my R-EPOCH was used as a stepping stone to get me ready for my 2 Stem Cell Transplants......... but I am over 7 years out from my last treatments and living the dream.

This link i had given you Questions to ask your medical team about Lymphoma will help you understand some questions you may in the future want to ask.

After 14 years my condition kicked off so I started with Oncology who did my Radiotherapy then was transferred to Hematology.... but it's just how things are done in the UK.

You may be give a Staging number, I eventually reached Stage 4a in late 2013........ Unlike in solid tumour cancers like Breast, Lung. Bowel...... cancers where a stage 4 diagnosis is a poor prognosis.... in Lymphoma it's not. Staging is used to identify where your Lymphoma is presenting, what treatment is best and how long that treatment needs to be used.

Make sure that you have clear contact information for when required, you can call in things like high temperatures as these need to be treated very quickly as things can develop rather quickly.

In the UK we are given a central Health Board Chemo hotline especially useful during out of hours.

Any questions you want to ask - ask them and someone will help you out as best as we can ((hugs))

Thanks for all the help. I didn’t mean to sound sorry for you, I just wanted to empathize. By presenting do you mean where? My main lymph node swelling tumour is in my back above my right bum cheek and I believe all the lymph nodes in that area are swollen and sore. That’s where I get the most pain. I cannot sit for long periods of time and can’t use hard chairs anymore. As far as I know they’ve caught it early but all this has hit me like a freight truck. It’s hard enough to do it in English but I have the added complication of doing it in English so often questions don’t immediately come to mind until much later. The links you provided will be very helpful. You raise a good point too as I don’t know where I should go if I get a fever or a cold etc so that’s definitely a point to raise. 
i have questions about cleanliness and hygiene for Chemo in my house and also regarding pets. Are there links here.?

• thanks for the help thus far?

I think that due to my journey being so long and complicated I have developed this survival mentality...... I am often asked "how do I control the stress and anxiety?"....... and I have to say that I very seldom have experienced this.

I have been dealt the 'hand' and I have to work with it as best as I can, but this often comes across as being very simplistic...... but simple is good in my mind LOL.

Yes presentation is the word that is used in the UK for 'where your Lymphoma is in your body'.

The pain can be rather dilabating as often the tumour mass surrounds muscle and nerves so this is often the cause of the pain...... but you should find that the pain should start to reduce in part as your treatment starts to melt the mass away........ but there will be different pain as the muscle and nerves start to stretch in their new found freedom.

As for Infection risk and control you basically need to think about the stuff that you most likely did when COVID became part of our lives but THIS LINK will help you work this through.

Generally it takes about 48 to 72 hours for your body to break down and/or get rid of most chemo drugs. But the effects of the chemo on your growth areas and your general immune system will last for weeks and is important to remember that you may well be more open to infections at about days 7-14 as this tends to be the window when our immune system is at its lowest and there is an increased risk of infection....... then your body recovers in time for your next cycle….. but the more chemo you have the longer the recovery can take so by the end of treatment it could take a few months this to recover completely

Generally look for good hygiene rules from everyone in the house, sterilise surfaces regularly, if you have two bathrooms in your house you have one dedicated for you for the first 3 days after your treatment to allow the toxins to be flushed away, double flush toilets, try and keep some air circulating in the house.

Watch you comes to see you, ensure that know one comes who have a cold or any other infection. Don't be a prisoner in the house try and get out for exercise and good for lunch but in quiet places away from crowds.

If you feel uncomfortable anywhere wear a mask........ don't take the risk. I was wearing mask back in 2014-15 before wearing masks became a thing.

Be careful with your pets, make sure you are not clearing up after them.

Try and not over think this.......... a day at a time and before you know it you will be half way through your treatment ((hugs)) 

1. Sorry to hear this.What stage are you? Is it NH, or Hodgkin's? Aggressive or slow Are you having R chop?

I’m having RChop at the moment I just completed chemo 4 but I now have an added complication, despite wearing a mask and having good hygiene I’ve tested positive for Covid. I’m fully immunized but I’m still scared. My only symptoms thus far are headache and dry cough. Anyone else got B cell diffuse and survived a Covid infection? Is  there anything I can do to help heal myself better ?

Sorry to hear this, in the UK people in the exact same position would call the NHS 24hr helpline and antivirals would be arranged for them and delivered using a taxi to the door…… or in some cases they go into a special area of the hospital and get a short antiviral IV infusion.

I have talked with many folks in the same position as yourself and most say they had nothing more than flu like symptoms….. you need to call your oncologist to see if there are antivirals available in Germany ((hugs))