Guys can I ask a couple of questions we're so new to this world...

How long does a chemo 'session' last? Is it painful? I just don't want him to suffer. How soon does the hair start growing back? Excuse my ignorance I really have no clue and don't want to google it.

What is the difference between the disease being curable and treatable? I know what the words mean I just don't know what that means for us...can you treat it but not cure it and what does that mean? Does it affect your life expectancy?

Rose - I know you mentioned something about your spleen having been affected. The dr mentioned it to us too (can't remember at all what he said) and the hubby has been having pain in his left hand side where the spleen is supposed to be. Should we be worried? Does he need to get it checked? I know you won't be able to give me the answers! Just wanted to ask in case you had a similar experience.

How are you getting on?

Best wishes

Honey_M

Heya [@Honey_M]‍ 

The thing to take away is that even if me and hbuck and others reply, every one goes through things at a different pace so just take everything as a guideline and with a pinch of salt so as not to be dissapointed or concerned.

I know Harry and I are on different treatment plans so even the two of us with the same kind of lymphoma will have entirely different experiences.

My chemo session lasts about 4 -5 hours. This is because I have to have my medication put through very slowly with saline alongside it as I find it gives me heart palpitations and this is one way to ease them. Originally it took about 3.5.

Some people definitely get discomfort with ABVD because the D is very irritating to the veins. This is one reason I got given a picc line as it goes straight into the deep veins and bypasses the little ones that can get irritated. I don't know what it's like for other types of chemo.

Regarding hair my hair started falling out about 2 weeks in but never really fell out all the way - I shaved it short because I couldn't be dealing with the mess but if I let it grow I can grow stubble quite easily. Hair on arms and legs seems also unnaffected. Whereas my friend up the hospital on the same chemo is completely bald and has been for months.

Regarding it growing back they advise it takes 3-6 months after finishing it as I say mines already kinda half growing when I let it, albeit patchy.

Regarding the treatable v curable. There probably is a difference but I've found my specialists have used the two to mean a variety of things. But my understanding is that treatable is where the cancer can be controlled, minimised and treated so that it doesn't impact life but that you might need to be on medication for longer. Curable is more difficult because I suppose they don't like to say something is curable as there is always the risk it won't be cured, but generally means the outcome will be you're cured in the long term.

I think my team only counts me as cured after5 years of observations in remission where the cancer hasn't come back and I'm showing no symptoms and scans are clear. Until the 5 year mark I'm deemed in remission not cured as there's a higher chance it will come back at those times. After 5 years I'll be at much a risk as anyone else.

My spleen was riddled with lymphoma tumors, but this quickly broke up after I started chemo. I didn't need additional surgeries or anything for it, the chemo did the leg work. I was given anti gout tablets when I first started chemo because when the cancer breaks down it releases extra lots of acids into the blood. Because my spleen was so rammed with cancer I had a load of acid and breakdown chemicals in my bloodstream to begin with but that tapers off after a few sessions. So don't get worried about the spleen specifically. The spleen still counts as the lymphatic system same as lymph nodes, if he doesn't have it in any other organ or bone then it will be a stage 2/  3.Whereasunfortunately Harry has it in his bone which is why he's a stage 4.

Hope this helps a bit

I'm doing well got my next dose tomorrow, just wanna get the week done so I can get back to feeling normal. Been playing a vr headset and dancing today so hopefully that gives you an indication that not every day is horrible!

All the best

 Rose

[@Ross2991]‍ 

Honestly the PICC line is a godsend! When I had my first chemo, the person next to me was struggling to find a vein for so long and I was just so thankful that I didn't have to be poked and prodded all the time like that.

Yeah thankfully I feel pretty normal now, day 8 is fast approaching and then cycle 1 will be complete! It has gone by quite fast so far. Although I am not looking forward to the G-SCF injections I have to give myself next week for 5 days.

I am really just looking towards that interim PET scan at the moment. It's going to come by really quickly! And my haematologist consultant said they hope to either see full early remission or at least the vast majority of the cancer gone, so either of these would be good news in my book. BEACOPP is known to be a very successful regimen so I have no doubt that it's doing its job! I have to admit though I spend hours some days reading through the different academic journals from trials where they document progression free survival etc for people who are treated at advanced stages, and even at stage 4 most of them are 85%+ for 3 year PFS with BEACOPP. I know the interim PET scan is quite predictive of the overall outcome of treatment so I'm trying not to worry, but I feel as it draws closer I'll be getting more and more scanxious. And my nurse said it's quite likely I'll be de-escalated to AVD after the two cycles of BEACOPP which would be ideal. Fingers crossed!

I'm pretty sure it was the Cyclizine they gave me haha. I did wonder why I slept so well that night! Considering the steroids. (Which by the way are making me eat like a horse lol).

I've actually stumbled across that Instagram page before! I did find it funny and I do have a little look every now and then.

I can't imagine how much you must be looking forward to mid January! I imagine if your interim PET was clear you'll have no problems at all!

Harry

Hey [@Honey_M]‍ 

My full treatment plan depends on the results of my interim PET-CT scan in the middle of January. I'll either continue with BEACOPP for a further 4 cycles (12 weeks), or will be de-escalated to AVD for a further 4 cycles (16 weeks). Basically after two cycles of chemo, you'll usually have a scan to make sure all is working and to see how much of the cancer is gone. It's honestly amazing how quickly this stuff works. Like I said before, all of my symptoms of lymphoma have gone and I've literally been on chemo since Wednesday.

As for the journey in general, I'm trying to just take every day as it comes. I can't really plan much in advance because it's hard to know if your body will feel up to it. It's usually in the mornings when I feel a bit groggy, sort of just a bit of a hungover feeling. But I just drink lots of water/juice and take the many medications I've been given and it's not long before I feel like myself again. We shaved off my hair yesterday which I'm still getting used to! It's a shame because I was just starting to like how my hair looked and was getting to know my barber etc, but I am thankful that I'm a boy and it won't be long before it grows back to a length I like! It must be so hard for women with long hair to have to lose it like that. But taking control of the situation is important and I wasn't going to allow it to fall out in clumps in the shower, I just imagined that to be really upsetting.

I am so grateful for everyone I have around me, my family, friends, employers and university have all been so good at doing anything they can to help. So yeah thankfully I have a great support system in place!

It's funny you mention the Dalai Lama actually, I've been considering learning more about spiritual stuff with all the free time on my hands. Maybe that book would be worth a read!

My first session of chemo on Wednesday was around 5 hours I believe, although it went pretty quickly when we were there. There was no pain for me, having a PICC line (as suggested by Rose) was a very good idea as it means they don't have to mess about trying to find veins. I can't tell you about hair growing back yet haha as mine is still yet to fall out! (Except on my head which was shaved off). But it's different for different chemo regimens, I've heard ABVD can be more sparing and BEACOPP (which I'm on) usually causes full blown alopecia.

As for the curable/treatable thing, my consultant said that after 5 years there's less than a 5% chance of recurrance, which is when you're considered 'cured'. Before then you're in remission and considered treated I believe. Most people who have Hodgkin Lymphoma are eventually cured. Even at late stages! I'm stage 4 and still being treated with a full curative intent. My consultant seems confident that I'll be cured. I've heard people say that staging for Lymphoma is different to other cancers, it's often used as a guideline for treatment options. For example if you're at a higher stage with more risk factors, you're considered more appropriate for BEACOPP, whereas earlier stages or those with more favourable risk factors are usually treated with ABVD and possibly radiotherapy. I believe survival rates are fairly similar for all stages really (obviously stage 1 vs 4 will have some difference) but overall treatment is very successful. If you look at the hashtag for hodgkin lymphoma on Instagram, you'll see loads of success stories with people who have beaten it at high stages.

With regards to fertility, yes I was offered to bank sperm before starting treatment. Unfortunately one of the side effects of BEACOPP is infertility, so if you're planning to have children it's definitely to be considered. This does also depend on the type of chemo you receive, I've heard different things for different treatments. But your nurse/consultant will have all the info about this!

Sorry if I've gone off on a bit of a tangent here haha but I've done my best to try to answer your questions as well as I can!

Best of luck!

Harry

Hi Harry,

No that was super helpful thank you so much. A lot of reassuring stuff actually. Which is helpful for when I ocassionally get a bit scared. Overall I feel so positive and strong sometimes I worry I'm in denial but whatever works is good right...? I need to be strong for the hubby though he's doing pretty well. He's just so ultra aware of his body and every ache and pain right now, and he worries that all those pains mean things are getting worse fast. I tell him it's stress and lack of sleep. 

We're just waiting to hear which type of lymphoma my husband has, fingers crossed it's hodkins;) 

The book I was talking about is called 'The Art of Happiness: a handbook for living' and it was the whole of 14p on Amazon:)

I'm glad you have a lot of support around you! Were you at uni when you got ill? At least you won't lose your place at uni if they're so supportive, you'll just need to put things on hold for a while and then you'll pick up where you left off which must be a massive relief. My husband's work has been super supportive too and so has mine so that's one less thing to worry about, not everyone has that (which is another blessing to be grateful for). 

All the best

Honey_M

Just wanted to pop by and wish you both a good Christmas and that you have a fairly side effect free one Harry :) 

I'm anticipating needing a blood transfusion in the next couple of days but will make the most of the time when I can!

All the best to you

Rose

Merry Christmas to you too! It won't be our best one but we'll make up for it next year:)

We've got an appt with a haematologist on the 30th but we got referred BEFORE the biopsy results have come through. We're still waiting so there's still a chance and when we do get a phonecall about the results at least we won't have to wait long to see a specialist...(if it's bad news) 

Good luck with your treatment, not long now!

Hi [@hbuck1]‍  and [@Ross2991]‍ 

Just wanted to say that we got our biopsy results today and we got all clear. No lymphoma. They suspect sarcoidosis or an infection. Just like that. We got misdiagnosed earlier and they told us we had cancer in the absence of any tests. We're totally shell shocked. Happy, scared, can't believe it. 

I wanted to say thank you to both of you for helping me get through this. I'll be thinking about you and I know you'll get through your stuff too. If there's anything I can do to return the favour please let me know. I wish you all the best and you can always get in touch if you're having a bad time.

Best wishes

Honey_M

Hello!

Oh goodness I'm absolutely delighted for the pair of you! But I feel you have a real case to complain there should you feel the need to.

Now you can go out and enjoy new year's!

All the best

Wishes

Rose