Gran of recently diagnosed HL

Hi Mog66 and a warm welcome to this corner of the Community although I am sorry to see you joining us but sorry to hear about your grandsons HL diagnoses. I am Mike and I help out around our various Lymphoma groups. 

I don’t have Hodgkin's Lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

The first thing to appreciate is that on the whole HL is very treatable with good results….. although the treatments used can be full on but do-able.

Over the years I have been volunteering on here but also with Lymphoma Action I have talked with many people your sons age who have successfully navigated the exact same journey

Incidentally Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment…… keep away from random Google searches….. you will find all the information you need on the LA site.

It’s unfortunate that this has happened just as he started Uni……. but it’s important to see this as a temporary bump in the road and he will get life back on track.

What exact treatment is he having?….. is it AVBD?

These treatments are very strong, but they need to be so that his Lymphoma can be killed off…… so U am not that surprised that he was feeling dizzy.

These are some of my simple tips.

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. I was only sick once during my 750+ hrs of main chemo and this was down to a bad food choice…… I just wanted some takeaway food….. believe me it’s not a good idea.

Cancer-related fatigue may well build up over time so he must 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……. But he us young so he will recovery quickly.

There is a real Risk of infection so care needs to be taken to control infection contacts. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs.

But the effects of the chemo on growth areas and his general immune system will last for weeks and is important to remember that he may well be more open to infections at about days 7-14 as this tends to be the window when his immune system is at its lowest……. then the body recovers in time for the next cycle….. but the more chemo he has the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.

I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must call it in……. This is especially important with regress to Sepsis as sepsis doesn’t always cause a high temperature though, especially if someone is taking steroids……. below 35°C could be a sign of infection which your immune system may be unable to fight so this needs to be called in.

I would also highlight the importance of drinking lots of water (the aim is 2 litres every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps him well hydrated.

It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.

Based on my long experience we were not  hermits….. we went out……. our mental health is importantly to consider. Just not crowded places like supermarkets, restaurants etc. We would meet up with family and friends in a quiet corner of a garden centre….. fresher is a good healer…….

We had family (4 granddaughters) and friends visit the house. The main thing is check that folks visiting are not carrying a bug…. coughing, sneezing etc….especially children. We would open the windows and let some fresh air in, good hygiene control…… We did this all the way through my main 2 years treatment 5 months of Chrome, 45 sessions of radiotherapy and 2 Allo (donor) SCTs….. and I did not have one infection.

You may find these links helpful…..

Top tips for family, friends and carers

Top tips for healthy eating

Top tips for the day of your chemotherapy

I have said enough but as an encouragement when I was first diagnosed our daughters were 14 and 18…… but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 69 in Nov and am now a few days away since my last treatment 9 years back and we continue to look forward to what else life has in store first us to enjoy.

Any questions just ask ((hugs))

Hello Gran - Great granddad Pete here - still in bed (disgraceful!) - about to get up and tackle the day and checked emails and saw your's (and Mike's). Mike (The Highlander) has given his usual comprehensive reply and I also want to do justice to your situation. So this is an acknowledgement of your email and will put finger (only one)  to keyboard later. I was diagnosed with Stage 4 HL in September 2019 - told in remission earlier this year and also told - after asking - that I will have to send out Christmas Cards this year - always a downside to anything.

Hugs and more anon, Pete X

Right-o gran- Pete back now to give a proper consideration to your original communication.

So what I am going to do is to give you some thoughts of a 79 and half year old who has been on a 6 and a half year journey. Problems indicated early 2018 and eventually diagnosed (Stage 4 HL) in September 2019. Followed by 2 years of chemo followed by a couple of years of immunotherapy (much heralded in the news as a significant "breakthrough" in treating cancer). Remission in June this year.

Now Mike The Highlander has given you tons of information. Now regarding information - Lymphoma Action, Cancer UK and NHS websites are the ones to read - there are tons of sites out there- stick with well known UK ones.

Your lovely grandson (he must be lovely because his gran is) is probably the best(?!) age to get HL - the chances of success is considerably higher compared to old gits like me.

Lymphoma Action details the Stages of HL - we hear on the news that Stages 3 and 4 are the horrible ones but this often refers to the sort of lumpy cancers like lung cancer. Not the same for HL - this refers to the spread in the lymph nodes.

Treatment - the staff in the centres are on your side. I've been treated in Oxford and Ashford (Kent) and the staff have been wonderful. But, and it is a big but - to echo what Mike has stated - your grandson must be open with the staff. If they ask him how he is feeling he must be open with them. The treatment may need to be modified. And between treatments if he feels quite unwell then he should have been given 24 hour contact numbers - use them. And that includes the Nurse Specialists who have tons of knowledge - to them your g-son is one of many. They act as the intermediaries between consultants/staff and patients/relatives.

Support. Check out support groups in the area - is there a Maggies Cancer support centre near you and g-son? Lovely restful useful places. Lymphoma Action run a variety of Zoom support groups as well as a buddy system. I am using the former at present.

Yes getting cancer ain't fun. Get the positives/fun out of it. If your hair falls out then as a member of the BBC (Baldy Buggers Club) think how much money you save in barbers and razors. Isolation is not always desirable. I was in a pub - bald as a coot (me, not the pub) and a little 4 year old kid was looking at me then he cried out to his family "He's got no hair". As an ex-NSPCC Inspector I had to resist the urge to . . . .

You can't beat a hug - except by more hugs.

So have long distance hugs from me and please pass on some to your grandson.

All the best to you all.

Always here for a natter, Pete X

Thank you Mike from a fellow

Highlader (Born and brought up in Drumnadrochit) but now in ayshire

I appreciate all your advice, last might he said he had the best night's sleep he's had in ages

Also one of the main lumps in his neck has all but gone, is that normal so soon? I and he were so surprised this morning to realise that it had gone.

He's having a lazy day today and Gran is feeding him up lol

One thing that does concern me is that he isn't a water drinker....any suggestions for a substitute?

Once again thank you  

Meant to say yes that his treatment is SACT

Hi again Mog66 Drum is a lovely place….. our daughter stays just over the hill in Ardendrain near Kiltarlity…… we are in Inverness.

Yes lumps going down quickly happens….. you can see from my story I as the same.

I hated water also se we played around with flavourings …… I also had lots of ice lollies…… it’s still liquid but in a different form and it’s good at keeping the ulcers away.

Pete Tenterden mentioned Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run various Support Platforms… both for your sin but fir you….   I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.

They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey (I am a buddy covering my type of Lymphoma and Stem Cell Transplant) 

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

((Hugs))