Not really sure how to start this so I'll try to get straight to the point. About a month or two ago, my partner was diagnosed with HL. They were only staged last week and by that point, we found out it was stage 4. I read online that even at stage 4, HL can be curable or at the very least treatable. I have so much hope but every day, I feel this doubt in my mind that I cannot shake.
They start their chemo today so I'm trying to stay positive but it's really difficult, especially as we don't live nearby as they've had to go back home for their treatment and are living with their mother.
Any general advice, tips, or things to expect are appreciated.
Hi mandirigma and a second welcome to this corner of the Community although I am sorry to see you joining us and to hear about your partners diagnosis. In the early days it can be stressful but let look for this group to be able to lighten than stress.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Hodgkin's Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma (CTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well……. and be encouraged…… HL is very treatable and yes the initial intention is to cure.
Staging in Lymphoma is indeed rather different and unlike most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.
Staging in Lymphomas identifies:
1) Where the Lymphoma is presenting in the body (it can be anywhere)
2) What is the best treatment approach and best treatment type for your presentation.
3) How long your treatment needs to be.
We could line up 10 people on the same treatment for the same HL and we will get 10 different stories...... as the Side Effects of Treatments can be ever so different.
My great CNS initial words were “……Mike you can read all the information available and then start to catastrophise that every side effect that you have read about will happen but the reality is very often rather different….. take each day as it comes, celebrate the good days, endure the not so good day”…… and she was spot on.
I had my main chemo back in late 2013/2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment. I had to go onto other treatments but I am coming up to 8.5 years out from my last treatment and I turned 68 in Nov and doing great.
These are some of my simple tips.
Nausea may be a challenge, but remember your partner must not to suffer in silence as there are lots of tools available - but their team need to know how they are 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 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 they do the longer the recovery.
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 their general immune system will last for weeks and is important to remember that they may well be more open to infections at about days 7-14 as this tends to be the window when their immune system is at its lowest……. then the body recovers in time for the next cycle….. but the more chemo they have 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 contact the hospital.
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.
There is no need to be a hermit….. they can go out. I would meet up with friends in a quiet corner of a burden centre….. fresher is a good healer……. The main thing is check that folks visiting you at home are not carrying a bug…. coughing, sneezing etc….. and open the windows and let some fresh air in,
The links I put up are all taken from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information about all things Lymphoma from what is Lymphoma. symptoms, types of Lymphoma treatments and many support platforms.
They run regular Support Platforms both for patients with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where both patients and carers/family can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.
Always around to help more or just to chat
