Please tell me your experience and tips

Hi again Doris77 and welcome across to this group.

I don’t have Hodgkin's Lymphoma but I have been on my Lymphoma journey for over 24 years so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

My type of Non Hodgkin's Lymphoma is incurable........ but on the whole Classic Hodgkin Lymphoma is very treatable and can result in very long remission and I know many people who have never relapsed.

Lets look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

The PICC Line will make life a lot straightforward......

ABVD is one of many types of regimes available, it is widely used and very effective......... as for the journey?.... if we line up 10 people on the same treatment for the same HL 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 through to April 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.

My story is rather complicated See my story as I had to go onto other treatments but I am coming up to 8 years out from my last treatment and I am turning 68 in Nov and doing great.

These are some of my simple tips.

Nausea may be a challenge, but remember you must not to suffer in silence as there are lots of tools available - but your team need to know how you 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 you 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 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 your immune system is at its lowest……. then the body recovers in time for the 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.

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….. you 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,

This link will help you get get ready for your treatment as it's a collection of suggestions from people who have been through treatment and are things that helped them during treatment...... Top Tips for the day of your Chemotherapy

Always around to help more or just to chat

Hello Doris - Pete here - 4 +years of HL treatment and still here. Tips etc? Firstly you are right to be apprehensive - only natural but hopefully you will settle into a routine. PICC line- make sure you are given a waterproof arm covering to protect PICC line, when you shower/bathe, to keep PICC line dry. Check out diet- you should be given a list of foods to not eat- essentially those who do not put you at risk of infection- e.g. unpasturised milk products- soft cheese. Minor inconvenience.

Go on Lymphoma Action website- brilliant- full of usefull information.

Trust your medics - they are on your side and want you to succeed. Get to know the Clinical Nurse Speciallist(s) associated with your trearment ward. They are a link between you and the consultant/ward staff. Lovely very usefull people. Remember to you, you are one of one but to them you are one of many they have seen over the years - loads of experience. Do not hesitate to use them.

Importantly, if a medic ask you how you are, how you have been feeling etc. THEN TELL THEM HONESTLY- do not hold anything back; treatment may need to be modified accordingly.

Share with family and friends - get laughs and hugs. If your hair falls out- so what- you will be a member of the BBC - Baldy Buggers Club. Hours of fun!!??

Best of luck and have a long distance hug from me,

Pete X

I had hodgkins lymphoma last year completed chemotherapy/radiotherapy all went well always take the advice from the consultant i had many side effects during treatment but now i still get tired and still have minor effects your body will tell you.

Hi Doris. I care for my husband who has Hodgkins. Sadly third relapse. I have read some great advice down on the messages and so sorry you feel like this. We both felt the same. Firstly the PICC line. Absolutely painless to have fitted. I was nervous and my hubby was saying its fine. No pain. Its the single most fantastic piece of kit. It took getting used to (I learned to flush it fir him but you can get nurses to do this). Make sure you have a waterproof cover for it. On a daily basis you can buy picc covers online. I cut ip a pair of toghts and that wirked well too!  As for the chemo my husband always says dont be alarmed if your wee goes red after. Its one of the chemos in ABVD. On your first one make sure you say if you feel a bit funny. They can pace it a d help you. From a carer managing side effects was a big thing fir us but we got  through. The following morning after his firet one he had black prches in his mouth. Again normal side effect. They faded. Just have a good salt water mouthwash. For aore bottoms we had coconut oil (say no more)….it was a godsend. And always good to have Laxido on hand. Now a lot of people worry about feelign aick which was my husbands worst fear. He told the nurses and they loaded him with some great anti sickness and he didnt suffer at all. He didnt wait for sickness to happen. He started at the off with them. We were both terrified at our journey ahead. But once we got into the pattern of treatment it was okay. He made sure that he smept when needed and communicated aide effects. Withing the first 6 weeks he showed teemendous progress. Hang in there and sending hugs xx