I'm new here so hi

Hi, I have been diagnosed with Mantel Cell Non Hodgkin Lymphoma in February, I have large tumours throughout my abdomen and looked 9 months pregnant!!!!

it came as a shock and like you felt scared and still feel scared about my treatment cycle. My first cycle of chemo they kept me in hospital to check for any reactions/ side effects. I received my chemo on 5pm one evening and the following morning I didnt feel well at all, struggled to get up out of bed and was extremely tired. My nurse said the best thing to do was to get up, get a shower, get dressed and try and get moving, which I did on the Thursday. I was discharged Friday with a bag full of medication. My lowest day was the Sunday, couldnt stop crying, struggled to get up from the sofa and no appetite. But gradually over the last couple of weeks I have got stronger, had very little side effects. I have tried to go for a small walk to get some fresh air and picked up a book which I havent been able to read.

All that said I am worried about cycle 2.

Be brave you will find an inner strength to get you through each cycle.

Hi, I was diagnosed on 20 August last year with an anal tumour, T3 N1a, and after the five weeks of treatment was over, on 20 November, I experienced moderate to severe pain in the anus up until just a few weeks ago. I know this is not what you want to hear but firstly, I was 77, and am now 78 years old, ie the older you are, the longer the healing process takes. Secondly, the longer the radiation soreness persists the longer it is working! I got my energy levels and appetite back only a few weeks after the treatment was over. It was just the pain and discomfort of the area around the anus and the the perineum that persisted. I was extremely lucky to have the loving care of my wife at all times. The way she put up with me was humbling. I wish you well and hope and trust your treatment is successful. We are to meet with my consultant this afternoon to hear the results of the most recent PET and MRI scans.  

Thanks for your reply, you keep your strength up too and fight through this! 

Thanks for sharing your story, I'm 46 and also have a loving partner(actually due to be married this year after 23 years engaged, hoping we can still do it) 

Good luck with your results today  

Hi Tigger ,

Welcome to our little corner of the MacMillan Online Community although I’m really sorry to hear of your recent diagnosis. 

I had the same treatment plan although my treatment was over 23 day opposed to the usual 28, this was due to me having my tumour surgically removed via local resection prior to the chemoradiotherapy. If you click on my username you can read a little about my journey there. 

Regarding the treatment for anal cancer we tend to focus on worst case scenario, I’m not saying g it’s a walk in the park but not everyone suffers the worst of the worst. I can share my experience. Like you I had a mitomycin infusion day 1 of radiotherapy, a couple of days later I had a couple of small mouth ulcers pop up & a bit of a dip in appetite but other than that no other side effects. I continued with oral capecitabine twice a day each day of radiotherapy thereafter (Monday-Friday with weekends off all treatment). I took the first prescription of anti-sickness medication given to me when I had the mitomycin on day 1 but didn’t need to renew that as I suffered no nausea when on the oral chemo. I did suffer with fatigue on & off during treatment & had a nana nap each day when I got back from treatment & was still in bed by 9pm. The skin reaction from the radiotherapy is probably the most prevalent side effect for most from the radiotherapy but my skin held up pretty well up until the end of my treatment when it began to get quite uncomfortable. Your treating team have a whole array of lotions & potions they can prescribe for your skin & any discomfort you have so always tell them if you have pain etc., as they can change things up & offer you something that will hopefully help a little more. Just one more thing, these side effects won’t just suddenly be there, especially the skin reaction, they build slowly & you manage them as they do, remember we’re all individuals & react likewise, the actual radiotherapy sessions a quick & painless. 

I’m sure there’ll be others along soon to offer you a warm welcome & share their experiences. Please just ask if you’ve any specific questions, no subject is taboo here there’s always a conversation going on somewhere about bottoms or poo! 

Nicola 

Hi Nicola 

Thank you so so much for sharing all your story it's very insightful to hear how others have managed throughout treatment, it's made me feel a bit better about things, I'm just so used to my docs doing nothing when I've ever been and have been back and fore the docs for nearly a year with this problem only got appointment with consultant as I think they were fed up of me phoning every couple days. 

So it's nice to hear the team that deal with it at hospital will help in anyway. 

As you said everyone is different and reacts in different ways to the medication, so will just have to hope my body is good to me for it. 

Thanks so much again

Donna 

Hi again Donna (Tigger ),

Unfortunately your experience of the long haul to diagnosis isn’t unusual! This needs to change & needs to change soon! Thankfully you kept going back to your Dr’s but it really shouldn’t take that long to be referred, it really does infuriate me as this is a very treatable cancer & that is obviously magnified by an early diagnosis, I was very lucky in this respect & as soon as I thought there was something wrong I was seen by a very young, astute locum GP at our surgery who after getting a second opinion from one of the practice partners referred me onto the 2 week pathway there & then. I have to say though that the colorectal team at the hospital thought I had an external polyp & internal ulcer that was to be repaired but during the op they decided to biopsy me instead. I was then diagnosed just over a week later with stage 1 anal cancer with no lymph node involvement & thankfully no metastatic disease. I went on to be treated at the NCCC at the Freeman Hospital in Newcastle with my surgery at the RVI in Newcastle & couldn’t praise both my colorectal surgeon, oncologist & radiotherapy team highly enough they treated me with great care & dignity. I hope you have the same care now you’ve got a firm diagnosis & your treatment plan in place. 

Nicola

It's such a shame it takes so long to be referred and you have to constantly hound them, but since being referred to a consultant, everything has been done so fast and everyone has been absolutely amazing can't fault any part of the hospital at all, just my GP. 

If he had referred me sooner I may have just been T1 but oncologist has said she's reckons it will be a good outcome so will keep everything crossed

I’m so pleased you’ve been happy with the treatment you’ve received from the hospital, they’re the important people moving forward.

We’ve people here that have been staged much later than you & I & have had great outcomes with this treatment.

It’s difficult when you're dealing with a new diagnosis & you’re staring the treatment in the face, I remember being terrified but once those first one or two days are done you’ll begin to relax into a routine a bit & feel as though you’ve regained a little control & try & keep your eyes on the prize, it’ll all soon be done & you can begin your recovery. I used the period when I waiting to start treatment to prepare as much as possible at home so that I didn’t feel like I’d have any running around to do during my treatment.

Nicola  

Your so right, dealing with the diagnosis has been hard, you never think it's going to get you so very hard to get my head round it. 

As you said it's so out with your control too which doesnt help, so yeh once I start treatment I'm sure I will start being able to get my head round every thing. 

I'm very lucky and have such good supportive family and friends, my partner and son have been amazing too. 

Supposed to be getting married in august after 23 years being engaged, so I'm hoping we can still go ahead and give me something other than chemo and radiotherapy to think about.