Stage two Hodgkins Lymphoma

Hi Amber,

I was diagnosed with Stage IV at the beginning of 2024 and had escBEACOPdac for 4 cycles. 

Regarding the PICC line, I will past here what I added to another thread a couple of months ago, as this is a recurrent concern.

''I was in another chat discussing PICC line a couple of weeks ago. You can find it here PICC line and washing advice - Macmillan Online Community it has some interesting information. 

I had one for 3 months and it was only bothering me for the first couple of days as you have a 'foreign' object on your arm and so you do fell something is there... not like you feel the inside, but you feel the skin. It is a bit itchy for a couple of days, and also every time you get it cleaned / flushed they have to apply some desinfectant so it will also be itchy for an hour after every 'service' (once a week). 

I was very careful sleeping only on one side for a whole week, thinking that I could damage it or something, but after that you get used. It is very strong and doesn't come out of place or anything. 

I understand how this could be uncomfortable for you. For me I just had to get it, there was no choice, as one of the drugs caused extravasation. I was very happy I had it, looking around at the ward and seeing so many people struggling with needles every day just made me realize how convenient it was. 

I bought a couple of these too in different colours just to give it a different look :) 

LimbO PICC Line Sleeve - LimbO Products | Thesis Technology Ltd "

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Fully understand how you are feeling. I worked from home and what I did was be off the 1st week of treatment, work a couple of days on the 2nd one, then work the 'rest week' again. I did it because I think it helped taking my mind off the situation I was in, and the job was not too demanding as I was a relatively new starter at the time. 

The biggest shock was also not being able to do much during the treatment weeks, I got really tired just by doing simple tasks like putting the dishwasher or even making scrambled eggs as I had to stand up for 5 minutes and move around... I was 31/32 and live with my girlfriend, no kids, had my parents coming around during the treatment weeks to help cooking, going to the hospital, cleaning, carrying the shopping bags... It is a tough time. But it is 'normal', I know this doesn't help but just so you know that most people with ABVD or BEACOP treatment experience intense fatigue. You read around how people with other types of cancer are recommended to exercise, move, try to be active... For me I was just told do what you can, don't force it. 

I was having antiemetics too. I didn't have mouth sores, I did mouthwashes with salty water for the duration of the treatment and that helped (?) but they are very common for most people. I was constipated for first three days of treatment but in the end I never took the laxatives as after 3 days everything was fine again. 

It is a massive shock to your life indeed. 

There's a bunch of very nice people in this forum, if you feel comfortable with it I would recommend posting any questions or doubts you might have, people have different experiences and we learn from each other. 

Hi Amber AN92 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about the challenges you are having.

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 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.

Your CNS is spot on, you need to define how you live…… not your HL or treatments define you.

The PICC line will help your treatments, I had my one in for about 4 months and I had no issues with it and made treatment far more straightforward.

My great CNS told me in the early days of my main chemo treatment that the less I did the more pronounced my fatigue would get…… as if you sit around all day your muscle mass is deteriorating and this will result in body pain and the way back will just take longer.

These signs are everywhere in our Heamatology Department and it is very true…… if you basically do nothing for week your body ages by 10 years.

During my second Allo (donor) Stem Cell Transplant (See my story) I developed a heart problem, so ended up in CCU a few times for a total of 3 weeks…… I went into the SCT process as a health 60 year old but left the SCT unit 4 weeks later with the body of a 90 year old……. The recovery was long and painful as I basically had to have physiotherapy to get me walking again,

AN92 said:

I am struggling with a sense of purpose

……. what is your ultimate goal that you want to see at the end of your treatment?…….. I think I am safe to say it’s to be well and in remission - don’t let the space between your ears control you…….. you need to control it and focus on the ultimate purpose in all this.

Are you n the UK AN92 ?

Thank you so much for your reply. 
I too am 32 years old and find the simple tasks of taking washing upstairs etc requiring a rest break which is alien to me. 
As this is my first treatment I am unsure what is to be expected throughout a cycle in terms of highs and lows. 
I am extremely nervous of the picc line as I don’t like needles at all and the thought of it being knocked or something sinister happening to it is currently keeping me awake at night but I’m trying to see how positive it will be for my chemo days and also bloods. 

Thanks,

Amber. 

Thank you so much for sharing your experience - it’s been very insightful. 

I am focused on getting my chemo all ticked off so I can get rid of this horrible situation - it’s the bits in between where I’m left with my own thoughts trying to lead a normal life. 

And yes I am UK based. 

Kindest regards,

Amber. 

Hi again Amber….. to widen your support base you may want to also check out 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… 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 on their various monthly Zoom groups.

They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey.

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.

The procedure of getting it in place is painless, you get some local anesthetic and in 5-10 minutes it will be in place. I was also a bit scared but the procedure is fine, it's just the initial feeling for a week or so that is annoying. You then learn that the thing is almost indestructible... 

I had to get bloods taken every week and 4 days of IV per cycle so it was extremely convenient for me. And especially as you are getting vincristine.