Second cancer in a year

It really is not great to use Google for this there is a lot of unhelpful stuff.

I found it best to stick with this site and Lymphoma Action UK'

Sorry I can't advise on having RT and then chemo but I am sure someone will be around soon who can help you. Good luck with your treatment it is not easy but it is doable. 

Hi Susan  and welcome across to this corner of the community. So sorry to hear your double cancer hit, it must have been such a shock.

On the whole this type of NHL although classed as high grade is very treatable with good results. Yes the chemo is a bind to go through, you may have some or none of the side effects but it is all do-able.

Do you actually know the exact name of the chemo you are having?

Google is a great tool but as always will give you a 1000 answers and only a few will be up to date, accurate and indeed helpful.

Do check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of up to date information, videos and run regular regional online Lymphoma support groups and indeed a great Lymphoma Buddy Service.

There are over 60 types and subtypes of Lymphoma so one size treatment does not fit all, but your type of NHL is one of the common types so treatment is well researched and very effective.

I was diagnosed in 1999 with a rather rare and difficult to treat Stage 4a Low Grade Cutaneous T-Cell (skin) NHL. I was told “Mike, I am sorry to tell you that this type of NHL is incurable, yes treatable but you will never be in remission”...... but after years of various treatments in September 2016 I was told I was in remission for the first time in 17 years - and I am living the dream…. so be encouraged 

If you look at my profile (hit my name) you will see that I have had 45 sessions of Radiotherapy as part of my treatment journey as well so understand the challenges.

We are here to help you navigate this as much as we can, no question is little or silly ((hugs))

Hi Susan and welcome to our little corner of the site, I cannot comment on RT then chemo, I would suggest you monitor your levels of fatigue as that can be a side effect of some treatments, they have a cumulative effect. To offer some hope and positivity, I was diagnosed back in 2009, had 8 rounds of rchop and have been in remission ever since, as have a number of others who I knew. I was stage 4 and had B symptoms as mine was in the abdomen and small intestine and that is classed as extra nodal because its outside the lymph system. Any questions just ask, the are a few of us around who can share our stories and experiences as and when you need it.

take care during this stage its often the hardest part.

John 

Thank you John.

I asked about the stage and other questions when I saw the haematologist doctor, but he was quite evasive and didn't give me direct answers!

I think he thought I was feeling too low to receive the info so didn't give it me. I'm GUESSING it's extra nodal because they had to remove a large mass in abdomen to be able to biopsy it. The surgeon then warned me it might be on my intestine but left it alone for now. 

The nurse said she was ringing yesterday but didn't and now have more questions to ask that the doctor wouldn't! He didn't look me in the eye - presumably because it was such bad news after already having had throat cancer. I left feeling a bit none-the-wiser. 

I don't know how to access blogs in this group - perhaps you could point me to some - and yours if you've written one.

Thanks for replying quickly!

Susan

Hi Mike! I was told about you by Dani from Head and Neck cancer. We are in touch regularly.

I don't feel as if I was given enough info at my consultation on Tuesday and have many questions that I thought I had asked, but didn't get proper answers to!

I'm guessing it's going to be R-CHOP, as some of the paperwork I was given had that on it. No idea how many rounds of therapy I'm having, when it will be completed and how they tell that you have/don't have it still.

 I'm GUESSING it's extra nodal because they had to remove a large mass in my abdomen to be able to biopsy it. But really, I feel in the dark about it all. The only thing I know is the date it starts on - 12th October. 

I'd like to be able to read some blogs of people with similar cases but not sure how to go about finding them!

It might help me to know what to expect in some ways.

Thanks for replying,

Susan

Hi Susan, getting clear information is like a treasure hunt at times some stuff here then more from someone else. The most important thing is to keep a level head and keep asking your questions. 

Unlike staging in sold tumour cancers like breast, lung, kidney….. in Lymphoma it’s not seen as a prognosis, more an indicator that point to treatment and duration.

Most people tend not to don’t blogs on the site but do keep their profile up to date so just hit our community names like Thehighlander and you will see some.

You can also go look at the older thread titles and look back at stories ((hugs))

Hi Susan, as Mike has explained the stage of lymphoma is less important when compared to solid tumour cancers and that can be confusing, which is why I think haematologists side step telling patients the stage, mine did too and it was well in to treatment when he confirmed it was stage 4 and in reality it changed nothing. I still needed the treatment and whilst back then they were playing around with treatments to try to minimise the exposure to toxicity, I was ok having 8 rounds rather than 6, its called rchop 21 and they sometimes do rchop 14 where its every 2 weeks rather than 3.

The treatment is do-able, the chop is pushed via a cannula so make sure they alternate left and right hand/arm each round otherwise only using one side will see your veins hammered. The R rituximab is give via a drip and takes a while depending on whether you react to it or not, 50% do and 50% don't. If you feel itchy, have a sore throat or come out in hives then you are reacting, tell your nurse straight away and don't wait and don't worry if you do they are used to it and know what to do. I did react so had to have all my treatments slowly as the was a limit as to how I could handle it.  

Constipation, dry mouth, metallic taste, hair loss and fatigue are the more common side effects, I found the first one a walk in the park though it took a long time and the second not so bad, after that the cumulative effects started to kick in. You may find your specialist nurse is busy but they should always get back to you, a good one is worth their weight in gold.

Once treatment starts it has an immediate impact and starts killing the cells off, we tend to refer to it as melting the mass away.

Many of us kept daily diaries so that when we went for mid cycle check ups we could explain how we had been so worth thinking about, drink plenty to flush the dead cells out and to protect the kidneys and if you can try walking everyday as it helps to.

I never did a blog but as `mike has said click on our names and you can read my profile, do post your questions and have a look on the lymphoma action site at their booklets you can download them or order them to be posted out, they explain DLBC well and will help you have a better understanding ready for that next appointment.

John  

Thank you John! That's a very comprehensive and concise description of what to expect and what might happen. I haven't really recovered from the radiotherapy I had after Christmas so hope I don't have too many side effects to put on top!

I think the hair loss would be the most different to the others you mention as I already suffered those. It hit me today when my nurse asked if I wanted to be measured for a wig. Apparently it's more likely than not, but if it means getting rid of the cancer, then it's a small price to pay. I've had my hair cut really short in anticipation! 

It's nice to be able to write/read about these things because friends don't want to talk about (or don't know about) such things and my husband is suffering from "carer overload" from the last 9 months!

Thanks again,

Susan

Hi Susan. I’m so glad you’ve found this group. You’re going to get some sensible advice here. I know tons about oropharyngeal SCC but nothing much about lymphoma apart from the fact that it’s very treatable. 
The tweet …. It’s here!! was a new phone. A red iPhone. 
I remember getting my biopsy results on my  PET/CT hotspot. When my oncologist told me it was clear ( I was expecting it not to be) all I could blurt out was , “ Just as well, I’ve just got a new 2 year contract on my phone”