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Husband diagnosed with non-hodgkins lymphoma

Purplemad
Posted by

Hi. My husband has diagnosed with NH lymphoma on 22.5.19 after we noticed lumps in his neck and is due to start chemo 24.6.19.  We met the consultant two weeks ago who said he has elements of low and high grade lymphoma. We then got sent for blood tests and were told we'd hear from her after the next team meeting which was last Tuesday. Since then though we got a call for him to go in for bone marrow samples and now they're sending him for a muga heart scan.  However, still not heard from consultant.

We haven't had any more information about his tests, don't know his staging and the lumps in his neck have grown massively this week to the point his whole right side is extremely swollen. Our keyworker nurse was going to find out if the consultant wanted to see us and I've tried to contact her to see if she's heard anything as I'm getting really worried about the additional tests because they weren't mentioned at our initial appointment but haven't heard anything. We also haven't had any more information about the treatment itself. He has pre assessment Friday but I have no idea what that involves either. 

Just feeling really out in limbo here and getting more concerned by the additional tests and how quick the lumps are growing. Husband thinks calling the doctor Monday will help despite me telling him it's the keyworker and we can't get hold of her. Sorry for the long post, don't know if I'm asking questions or just venting but it's hard to move forward when you have no idea what's going on.

Thehighlander
Posted by

Hi  and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear about your husband.

I am Mike  and I help out on our Lymphoma Forums. I was diagnosed in 1999 and I am still around to talk with you so be encouraged, this can be treated.

A blood cancer diagnosis can bring a lot of stress on a family but talking with people who are on the same journey will help a lot and will help reduce the whirlwind wind that is rushing in your head.

There are over 80 types of Lymphoma but we do have number of Lymphoma Forums but start with joining our General Non-Hodgkin lymphoma forum where you will connect with people who understand the journey your husband is on. You can ask the folks questions about treatments, what to expect and how to help him during this time.

Follow the link and join the group. To do this hit the ‘Join the Group’ tab just under the main group name. At this point go to the right on the group home page and select how you want to receive email notifications when someone answers your posts. If in the future you don’t want to receive notifications just switch off the email notifications tab.

The best way to get support is to go to the 'Start a Discussion' tab just under the main group name. Set up your own Discussion and Introduce yourself to the group - you could just copy an paste what you have in this first post.

The waiting is hard but it is very important to get an exact type for his NHL as this will help his team find the spot on treatment for his presentation.

Blood cancer is nothing like solid tumour cancers as once treatment starts it basically melts growth areas away.

Has he had a PER/CT Scan and a biopsy done on the growth area?as these are the main ways of find out what type of NHL this is.

When you feel up to it thank about putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself.

To do this click on YOUR username, look to the left and select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - REMEMBER hit the big green SAVE before you leave the page. If you're not sure what to write you can take a look at any members profiles by clicking on their username.

I will look out for you on the NHL Forum.

((hugs))

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

johnr
Posted by

Hi and a second welcome and sorry to read about your husband, whilst the is lots to share and lots for you both to learn, the one key point is to ensure he gets a correct diagnosis and hence the right treatment. The are a number of types of NHL but very few which can be classed as showing elements of low and high grade lymphoma and a small number can transform from low too high. In your husbands case its important to know is it transformed or not and if needs be ask for a second opinion on the biopsy as on rare occasions mistakes can be made. I say this not to frighten you but to help you to ensure you can ask some questions at this early stage to ensure he gets the best treatment and hopefully the consultant will explain his presentation and the types or type of disease he has. 

The other point is sometimes you have to have pointy elbows and keep chasing to ensure he does not get lost I the system, re pre assessment I would expect they will talk him through treatment and give you both lots of information.

Do join the NHL group and ask all the questions you need to 

John 

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Purplemad
Posted by

Thank you Mike, I will head over and join that group now. My husband had an ultrasound where they took a biopsy and he also had a CT scan. He's since had the bone marrow sample taken and now a MUGA heart scan this week. We don't know the results from any of the tests except the biopsy which confirmed lymphoma.  I just need to know where we stand, especially with the growth being quite large now. I will chase up our keyworker tomorrow to see if I can get them answers. Thank you for your help xx

Purplemad
Posted by

Thank you John. I will be chasing up our keyworker nurse for some answers tomorrow and will be joining the NHL group now.  Claire