Newly diagnosed with Classical HL

Oldly**

Oh I am so sorry to hear about this. My partner started with an armpit lump and hacking cough for two months and was told it was sarcoidosis before having a biopsy confirming Hodgkins a week after his 30th birthday. 

We were led a merry dance because it doesn't happen to young people! Only it does and it has been the hardest year of both of lives Covid aside.

He saw the haematologist last Thursday and got told a complete response after two cycles of BEACOPP escalated so has just to have two more. He normally has around 3 flu like days each cycle week 1 and has a critically low WBC count for a few days week 2 until the injections bring it back up. ABDV is less invasive tha  BEACOPP too! 

On the whole the start was the hardest. Preparing yourself for the unknown. 

Here are some things I've noticed..

1 - keep friends and family close. Don't be afraid to ask for help they'd do the same for you especially with childcare.

2 - keep to a routine on days you are feeling well. You will have good and bad chemos days. Even if its low key try to plan something you enjoy on your better days. My partner eats like pacman on week three typically and looks forward to his favourite takeaway for example! He's also not walking far but getting out for fresh air daily which helps. 

3 - headspace has a coping with cancer meditation app which has been a god send ! 

4- keep a journal/blog /get it out. Reach out for support services attached to the clinic ,Maggie's leeds have helped me loads. They offer emotional and practical support remember you are never alone.

5- keep your mind occupied on better days too! Whether that's writing a list of things you want to achieve after treatment , suduko, baking , cooking anything like that! 

6- my partner finds chemo fine now and uses it to read and find the nurses have always been amazing. I whatsapp him because I can't be there. 

It is so hard but you will find the resilience ! you've got this Bellaboo Xx

Hi Nikki2020 Thankyou so much for taking time to reply, this is really helpful stuff so I’ll take it all on board, wishing your and you husband all the very best for the future xx

Hi Bellaboo, 

I am terribly sorry to hear your news. I have recently finished the exact same treatment you are about to receive and I am now in remission. I was diagnosed with classical Hodgkin's back in March and I underwent 6 cycles of ABVD.

I too have two young children and have gone through more or less what you are going through and I can only say that you can do this as I have! It is a curable cancer with very good statistics and this is what I was focusing on when I was diagnosed.

I tried to be positive and found this forum extremely helpful. I prepared for the treatment as this was more daunting in some ways than the cancer itself.

By knowing what to expect allowed me to prepare both physically and psychologically. The treatment can cause sickness but there are amazing anti-sickness medications nowadays; I would urge you to discuss this with your doctor and the options available. The ones that I was given were Metoclopramide, Ondansetron and Emend; the last two were the most effective for me. I didn't have any sickness really during my treatment cycles even though for the first few days I would feel a bit nauseous. This mild feeling would only last for up to 3 days for me. 

The treatment can also lead to constipation due to the fact that it dehydrates your body. Your medical team will advise you to be drinking plenty of water; I was drinking at least 3 litres especially for the first few days after treatment. Water will obviously help with constipation but it will also help your kidneys and facilitate with the flushing of the dead cancer cells from your body. I also discussed the possibility of taking laxatives during my treatment and my doctors prescribed me with Laxido so I had this handy when and if I needed it. 

In terms of general well-being, the first week after each dose, I felt quite run down, a feeling of general weakness not allowing me to do my normal day-to-day things. It was not a nice feeling but it was better than I had imagined. The second week, my body would recover slowly until the next dose and this pattern would repeat throughout really. I did see that treatment had a cumulative effect on me making it a bit more difficult as I was going through the cycles. Having said that everybody is different and I have heard people say that all 6 cycles were more or less the same for them. 

In terms of diet, I indulged myself to eating anything I liked! Thankfully, my appetite was not really affected and I actually gained weight during treatment. Having said that, my appetite was not at its peak for the first 3 days after each cycle but then it would, thankfully, go up. 

In terms of hair loss, it did happen about 1 month after the first cycle. Some of my hair would fall off every time I would have a shower or comb my hair. I decided to cut it to a few millimetres length and that stopped it from falling off completely. I wasn't too bothered about losing my hair. I was quite concerned about how my daughters would react though. I was preparing to tell them that I am trying a new look but to my surprise they loved my new hair style! 

People would say to me that the treatment will go quickly and I wouldn't believe them. It did though and the majority of people have a very good prognosis. 

Keep positive, don't be afraid to ask for help. Keep your nursing team informed about your treatment side effects. They are there to help you and need to know how you feel.

I wish you all the best. 

Best wishes, 

Manos

Hi manos, thank you for taking time to reply. Your words have really helped with how I feel, Thankyou. All the best in your remission x

I have just finished 2 cycles of a clinical trial and now like you I am looking at 6 cycles of ABVD. I had the first one today and although as nervous as you are. I really need not have been.

Picc line means no cannulas stabbing you and the nurses are wonderfully supportive.

No pain for me whatsoever I just have to wait and see what side effect I get as it’s different for everyone.

I console myself with however bad it hurts me it will be hurting the cancer a lot more , for me that’s the name of game.

You are a lot younger than me so probably won’t need it but good luck anyway , you got this.

Hi there Mr Anxious, thank you for your kind message, I start treatment today and weirdly feeling quite relaxed now. I wish you all the best, how are you feeling?? Any side effects yet?x

Fatigue has been the biggest problem so far, and make sure you keep your fluids up.

You will probably get a bunch of take home pills , listen to the nurse they all have a different regime but stop you feeling sick if you get it right lol

Hi, 

Im so sorry to hear about your diagnosis. I was exactly the same. I had a lump in my neck and was diagnosed with classical hodgkin's lymphoma. I started abdv within 2 weeks of diagnosis. 

I had 6 cycles of abdv and was told i was in remission in july. I also have 2 young children. I found that they adapted really well. We told them that i was sick and i needed special medicine every 2 weeks. They are 2 young to know the fear of cancer luckily enough so they just got on with it. 

I was worried about my first chemo session. I had to wait over an hour after my appointment time because my drugs had not been delivered yet. This happens quite alot so be prepared to wait. Take a book or something to keep your mind occupied. 

I would go to a room with about 6 other chairs in and you will get your blood pressure and temperature taken. You then get hooked up to a saline drip. This is how you will get your chemo. 

The red one they use left a horrible taste in my mouth. I would have mints when i had this to help with the taste. 

The last chemo drug they used would feel like it was burning my arm so i would have it mixed with saline and slowed right down. I also had a heat pad on my arm that the brilliant nurses gave me. It helped alot. 

I was expecting to feel sick when i came out but i was hungry. Very hungry. Its like my appetite came back in a flash. I couldn't stop eating. I gained weight while on chemo. Alot of other people i saw having the same treatment also gained weight. 

I would find that the first week i would sleep alot and tge second week i was nearly back to normal. Just pace urself and you will be fine. 

Constipation is a big thing. I found that tge anti sickness tablets did if for me. I used max senna the first night of chemo and for about 3 nights after. Then id use normal senna for a couple more days. 

Yiu can do this. And it really does go quickly. Any questions you have tgen please ask. There are lots of people on here that have been there and felt exactly like you are feeling. Good luck