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Hodgkins lymphoma

21 Oct 2019 16:11

Hi all,

I just thought I would post a bit about my recent diagnosis of the type of cancer called Hodgkins Lymphoma, which I found out I had just Friday afternoon. A couple of months ago I noticed a swelling in the left side of my neck which looked noticeably different to my right side, which I shrugged off as I thought it may have been a work related strain. Not long after, I notcied a few smaller, almost grape sized lumps higher up, one on my throat, and another around the jaw bone. Thinking that didn't look right, I went to the GP, and he told me it was swollen lymph glands, and put it down to either an infection or cancer. 

  I've had 6weeks of not knowing the cause, but now that I finally know what is going on, I can get the ball rolling on getting the treatment I need to get myself better. 

Hodgkins lymphoma

21 Oct 2019 19:47 in response to toughmuddertim

Sorry to hear about your diagnosis - I was where you are 3 months ago. I just wanted to say that I've just had a very positive Pet scan midway through my chemo for Hodgkin's lymphoma stage 3, and that I have responded to the treatment of ABVD so well there is no sign of active disease! It is difficult to get bogged down on everything but please know this is a very treatable cancer with many viable treatments available. Stay positive! 

Wishing you the best and feel free to message anytime Happy

Rose

Hodgkins lymphoma

22 Oct 2019 02:58 in response to Ross2991

Hi Rose thank you for reply,

 

I think the hardest thing for me was to hear that I have cancer, regardless as to how good the success rate of curability is. At the moment I don't know how aggressive it is, as I only found out on the friday, so I'm kinda putting on a brave face. I am glad you are responding well, I would not wish this to happen to anyone  Happy  Can I ask, how did/is your treatment affecting day to day life? I have been told I will need chemotherapy once a week every 2 weeks, and naturally I am worried about the finacial situation. 

  Thankyou for your support, and best wishes to you and your family  Happy

 

x

Hodgkins lymphoma

22 Oct 2019 14:05 in response to toughmuddertim

Hey

 

Yeah I'm on ADBV which is every two weeks, there's a few regimes for it but it's probably likely you'll be put on that for Hodgkin's. 

I will be frank and honest, chemo is pretty tough mostly due to the repetitive nature and cumulative effects.

I personally find I have one 'off' week, I get chemo on Monday, and do nothing for a whole week due to fatigue, nausea and the immediate side effects of the treatment. Moving into the second week I start to feel more myself and by day 9/10 I'm eating and up doing things day to day but I don't push it. I'm 6 doses in and have noticed the fatigue has definitely increased with each dose so on my good days I only try to do things I enjoy e.g walking or painting or bits around the house.

During my good days I make a big cook up of soups and stews etc. And freeze them into small pots as my appetite is low, so I know I've got them to hand during my first week when I haven't got the energy to cook. 

Netflix is also my best friend as when I haven't got the energy to physically do much I still get bored once I feel a bit better a few days in.

I did write some advice for pre chemo on another board I'll try and find it for you.

I decided to take sick leave whilst on chemo as I knew I wasn't going to be able to work. Lymphoma treatments often leave your neutrophils/white blood cells very low and you're at high risk of neutropenia and getting infection so working in an open plan office I knew was not a good idea at all.

I've been really lucky that my work pays me half pay, some people don't get more than SSP. However Macmillan does one off grants and you can also apply for ESA if you can't work, along with PIP. Google them, they're government benefits. It might be worth talking to your employer and finding out what your financials will be and how long they will pay you if at all so you can get a head start on it. You can also apply for universal credit but I know this has a lot more means tested elements and looks at whole family incomes. I wasn't eligible because my partner works.

Macmillan has been great in helping me deal with the financial organisation and have lots of help and ideas, I recommend visiting their website and if your hospital has a Macmillan center like mine then check them out.

Best wishes, I'll be intruiged to know what chemo setup you get put on so let me know - if you want to of course!

Rose

 

Hodgkins lymphoma

22 Oct 2019 14:09 in response to toughmuddertim

However, a few tips now that I'm halfway through my Hodgkin's lymphoma treatment that I could suggest.

- now might be a good time to do a big cook up of a few things you can freeze for quick and easy meals when you have no energy. On my good days now I make a big thing of soup so I know it's got loads of veggies in and a Bolognese or chilli or stew just so I've got something in small easily defrost able portions when I have zero energy on my chemo weeks.

- arrange your room so that you've got everything easily accessible. For example we moved our bed away from the wall so that we could both have a bedside table. Also because I don't disturb my partner when  i'm up and down all night whereas before I was clambering over him to get out of bed.

- make sure you've got a bag of spare clothes and toiletries along with a list of medicines ready to go incase you need to go to the hospital. I was admitted after my first chemo after a couple of days because they hadn't got my nausea under control, I had no clue I was going to be admitted so went with nothing. Having a bag ready with clean clothes and toothbrushes and a charger is now a must for me as I was admitted a couple more times after that and it takes the strain off trying to get people to bring it in for you. Plus pack a book or a game or something you know how hospitals can be.

- download a symptom tracker. This will be super useful when you first start as symptoms are different for everyone. You will never know how you will personally react to chemo so having an app to track daybby day and hour by hour will help your medical team help you. E.g my nausea was horrendous at first but when I showed them just how frequently I was feeling sick they could see it was being particularly debilitating and prescibed me stronger meds. It's also a good way of tracking symptoms that usually get worse as chemo goes on, e..g fatigue and neuropathy.

 

- just be entirely honest with your medical team. You  will probably find the firsT couple of sessions to be the worst as they will be tweaking your medicines depending on how you react as everyone reacts differently. Just be entirely honest with how you feel and your symptoms. There are so many ways and meds they can give you to manage these so don't suffer on in silence!

- if your tastes start to go or you feel nauseous, don't eat your favourite meals. It sounds strange but you will end up associating it with chemo and I can't even face some of the food I used to love because I ate it when I felt rotten and now it's just a nasty reminder.

Just a few things off the top of my head.

Hodgkins lymphoma

22 Oct 2019 20:19 in response to Ross2991

How did you combat the nausea?

What did you have for pain relief?

Hodgkins lymphoma

22 Oct 2019 21:36 in response to Lulu28

Hi Lulu,

For nausea I'm on three different medications ; they started me on two standard ones but when they knew I wasn't coping added a stronger one to the mix. I still get some nausea but ease it by not cooking, eating when I felt up to it (having something in my stomach seems to help oddly) sleeping upright  andsitting quite upright when I'm in bed, and a cold compress on my head. It starts to ease off after about 9 days after treatment and I reduce my nausea medication so that come day 15 when I have my next chemotherapy it helps the nausea like I need it too. 

Pain relief is tricky. My medical team don't let me have anything like paracetamol or ibuprofen as it can artificially lower a temperature. As I'm neutropenic - meaning having severely low white blood cells to fight any infection - they want to avoid the risk of infection being 'hidden'. So for pain relief for headache I usually have cold flannels and ice blocks on my neck, and I use deep freeze gel on my forehead. For bone pain I take a bath or use ice packs or try massaging. 

I know plenty of people on chemo who use paracetamol but you have to be careful and not use it as much as a normal person, and monitor your temperature through out. Best to ask your cancer nurse what they advise.

Hope that helps

Rose

 

Hodgkins lymphoma

23 Oct 2019 10:30 in response to Ross2991

I am taking Zoramorph and liquid oramorph and paracetomol for pain but have been told i may need chemo after results from biopsy this is no starting to scare me.  I feel sick everyday so have soup my weight has increased carryingbalot of fluid and they do not know where it is coming from and very constipated so have dioctyl daily.

Hodgkins lymphoma

28 Oct 2019 13:51 in response to Ross2991

Thank you very much for all the information you have given me, it's given me a good idea of what to expect, and some of the things I need to expect and arrangements to be made  Happy  It is still a bit raw to think of what is happening, and to talk about it, but I am trying to carry on as best as I can with normal life, still at work for the time being until things start to happen, so that's kind of taking my mind off things.

I have my PET CT scan tomorrow, so kinda glad that's happening as it will give us more information as to how badly the cancer is and id it's spread, and then we can work on a treatment plan. I think at the moment it's the annoyance of not knowing, as it's been pretty much 2 months of not knowing what it is, so having the scan will hopefully give me a bit more of a peace of mind  Happy

 I want to thank you for the information you have given me, and just for listening and sharing your story and wish you a speedy recovery  

Hodgkins lymphoma

30 Oct 2019 20:09 in response to toughmuddertim

Hi there,

so I'm a little behind you I think, 6 weeks into diagnosis territory, had 2 biopsies and know that I have 3 areas of swollen lymph nodes due to ct scan, large one on collarbone which is the one I noticed, one under arm and 2 smaller ones that have merged behind my heart. Radiologist is 99% positive it is lymphoma and do waiting for biopsy official results any day now and hoping they'll tell me what type too. The waiting is torture tbh, give me needles any day wishing you all the best with your treatment plan x

Hodgkins lymphoma

30 Oct 2019 20:39 in response to Birdie8

Hiya,

I'm so glad that you're getting it all cheked out and sorted  Happy  I agree with you, it's the not knowing that is the worst part, as from day 1 the Dr told me it's swollen lymph glands which could have been caused by either an infection or cancer, and he didn't know if it was cancer. I think from what you have said, we have similar symptoms, and by looking at images of the different stages of Hodgkins Lymphoma on this site, I would say that we have the stage 2 type. However, don't hold me to that, as I was proven to be wrong when I was telling friends/family, colleagues etc "I'm sure it's nothing serious, if it was anything bad I would have heard something sooner into the 6 weeks". 

  I hope the results are good for you, and whilst it's a horrible thing to have to think you have cancer, Hodgkins Lymphoma is a highly curable type (I'm sure you've been told?) with what I was told as a success rate of 80%, so there is a kinda, bittersweet side to it. 

Wishing you all the best for your results, and for the future  Happy  

Hodgkins lymphoma

1 Nov 2019 14:15 in response to toughmuddertim

Thanks for the reply, sounds like we have similar stories, have you had your pet scan now and do you know more? I've got my follow up apt on Monday at 11am so hopefully will know what type then and have some kind of plan! Tc and hope you have a treatment plan soon too x

Hodgkins lymphoma

3 Nov 2019 11:46 in response to Birdie8

Hiya,

Symptoms wise, I think we are in similar positions, however I have recently had my PET scan and the results came back kinda worse, in a way, than I thought, in the fact that my Hodgkins is at stage 4. Which, like I said sound worse because of the stages, but it just means that the disease is both above and below the diaphragm with more glands affected, and a highlighted area around the bone marrow, which I have been told I may have to have a bone marrow sample taken. Still treatable, with the same chemo treatment.

 I have a appointment on monday with the specialists to discuss the next steps, but I'm just glad that I can finally look at getting it sorted

x

Hodgkins lymphoma

3 Nov 2019 18:05 in response to toughmuddertim

Hmmm sorry to hear your results are worse than first thought, can I ask was that result different to the CT scan then? Reason I ask is that I have lots of stomach ache and general aching ( like you're about to get flu) and do in a way I was surprised nothing showed up in stomach on CT scan, can PET scan show more that a CT scan can't? Don't want to overly worry but just want to be prepared that that might be the case? 
Glad to hear you're seeing specialist soon and hopefully then you'll get a treatment plan TC x

Hodgkins lymphoma

4 Nov 2019 17:17 in response to toughmuddertim

Hiya so today found out it is Hodgkin's lymphoma, loads of scans and more blood tests but due to start ABVD treatment on the 15th, given so much info today my mind is blown! And I will lose my hair which I'm gutted about but just got to get on with it, pet scan tomorrow... have you anymore news?