Chemo care package

Hi Emmie109 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 Diffuse large B-cell lymphoma (DLBCL) 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.

The initial aim of treatment for High-grade non-Hodgkin lymphomas like DLBCL is to cure and there are a few different treatment regimes….. do you know the exact treatment he is having?

Some regimes are done as a one day inpatient but others like my R-EPOCH had me in hospital for 6 days/5 nights on my 2 IV pumps 24/7 for my 6 cycles but although I had a lot of treatment I did fine and it did the job as my chemo was a steppingstone to go into my Stem Cell Transplant.

As for suggestions for what would help him during treatment do check this link Top Tips for the day of your Chemotherapy as this is collection of tips from a large group of people on the Lymphoma Action Support Platforms. The link looks directly at being in hospital but the suggestions do transfer to when he is at home.

He may experience Side Effects of Treatments but these can be managed. 

Nausea may be a challenge, but remember he must not to suffer in silence as there are lots of tools available - but his team need to know how he is getting on as at times it is trial and error to get the right one.

Cancer-related fatigue may well build up over time so he needs to take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less he does the longer the recovery.

There is a real Risk of infection so care needs to be taken to control infection contacts. Check his temperature regularly and do call his clinical team during normal hours and the chemo line out of hours if you are in any way unsure.

I would also highlight the importance of drinking lots of water as this will flush out all the toxins released by the chemo and protect his kidneys.

As I said my type of Lymphoma is incurable but I am over 7 years out from my last treatment, turned 67 last Nov and doing great.

If you have any specific questions do ask them as someone will be able to help out ((hugs))

Hi Mike. Thank you so much for your kind and thoughtful response. Your journey does indeed seem an epic one but you are very brave. 

I will be sure to be in touch with any questions. Thank you again.

Emma 

Hi Emma Emmie109 we all do what needs to be done to get through this and move on and live...... I don't think any of us are brave but as times goes on we become more determined.

This will all feel so challenging but on the whole it is do-able...... it's all about dealing with the bumps in the road 'if' they come and keep focused on the greater good in all this.

Do you know the name of his treatment as with this information we can possibly help more ((hugs))

Hi Mike.

Thanks so much. I am unsure of the name of treatment. I shall find out very soon I think :)

Hi Emmie sorry to hear about your Dad, my husband George was diagnosed a year ago he has finished his treatment and his prognosis is looking very good, he is awaiting his last scan which will be on May 4th, he went through 4 rounds of chemo but he came through it very well, he did find he was quite thirsty so some nice drinks for him would be good, he also listened to a lot of music as well, funny he did not really crave any one thing, except his head of hair back, we told him we were getting him a hair net for Christmas as we kept finding clumps of it all over the place, but really just be there for him, there will be times when he feels down so just listen and be strong, this type of cancer responds very well to treatment so good luck to you and your Dad will remember you in my prayers, and by the way his hair has come back as beautiful as before.  Be strong and God Bless

Hibbie

Hi Hibbie.

Thank you ever so much for your thoughtful and kind message and for sharing your story. I am so pleased to hear that your husband has responded well to treatment and your words give me hope. It has been such a difficult time.

I shall go on the hunt for some interesting drinks and I think he might need a hat for warmth. 

Thank you

Emmie

Hi Emmie

One of the things I munched through was lots of ice lolly's.

I also started drinking a lot flavoured teas. Lemon and ginger was my favorite and I still drink it. I know a lot of people liked frozen pineapple chunks.

I know there is lots of talk about eating healthily but I found if things that are palatable is the way I went.

Thank you so much. This is very useful

Apart from the usual hair loss (do you have a plan for that?), chemo made my skin extremely dry and my fingernails and toenails extremely weak, so I'd definitely include a moisturiser which is recommended for oncology patients as well as the lip balm.

Some people develop an extreme sensitivity to cold while having chemo, so gloves can be helpful when taking things out of the fridge.

Chemo alters your sense of taste, with things tending to taste metallic and like cardboard in turn.  Strong flavours are a welcome relief from this.

Extra soft toothbrushes are needed and it's worth buying the toothpaste, mouthwash and mouth gel that are formulated for chemo patients.

Every chair in my infusion centre had free television but it didn't appeal to me.  Infusion days can be long so books, audiobooks, podcasts, music, etc can help to pass the time.  Subscriptions to services offering those are appreciated by almost everyone.

My daughter and her partner bought me a tablet to take to chemo but I developed severe neuropathy in my hands and feet during chemo which made using it difficult.

Thank you ever so much for your useful suggestions and support.