Your daughters diagnosis sounds similar to myself. Send her my best wishes and if you want to ask any questions feel free. i had a large mass in my chest which was reduced by chemo and then a stem cell transplant. I lost my hair and could not eat before due to the mass pushing on my chest and making me sick. Then due to the chemo i lost my apetite again

I said in a previous i had really big problems with my mouth and i see you mentioned this about your daughter..... try ice cubes and ice lollies i found they really helped! I lived off of coco cola as well as the fizzing helped my mouth as time went on i would also drink it flat to help with my tummy! Pineapple also helped with my mouth ulcers

Hope this helps

Hi

Your not the only one out there that knows someone that has/had nhl as my grandad has it and im here if you need to just talk about things

Hello All

Thank you for your messages , my daughter Rosemary has now had her 6th of 6 treatments of CHOP Chemo  , this Thursday she goes for a scan to see what the results of the last five months of treatment are we are hoping the mass has shrunk as it had shrunk by two thirds at half way stage ,

Rosemary then sees the consultant a week later to review where she goes from here all depending on what they find , he did say at our last meeting he would like her to have a Pet scan but as these cost £700.00 a scan he needs to have a meeting with his team first

I do worry about her as she says she's ok when we know she isn't , she's had this sore mouth problem all through her treatment it comes on after the second week each time with medication it goes better ,but during this time she eats very little , she tries to eat well when her mouth is ok but its only small meals , before she was diagnosed with NHL she weighed 8 stone she is only a small person but now she is 6 1/2 stone this does worry us and her , she has had an angry  rash around her mouth and on her chest since treatment started it goes with prescribed wash and cream , but its still prominent now with brown blotching

Rosemary seems to have lost interest it going out even just for a little walk , she manages the supermarket with us once a week and that's it ,she does not live with us she want to be in her flat with her 12 year old daughter ,but we go as often as we can to keep an eye on her ,we more often than not find her lying on the sofa asleep

Those of you who are carers of cancer patients how do you get a meeting with someone at  the hospital,on our own ,as we have various concerns, we would like to know what the prognosis is ,and see if someone can call on Rosemary and check her out at home as we think she neglects herself, and advice coming from someone else might help , she's had one visit from Macmillan nurse in five months  we worry so much about her , we don't like the colour of her skin we , her weight loss we feel she dosent take her tempeture as she should , but she tells us she does if we ask her too many questions she gets sharp and crabby with us, its hard to know what to do for the best .considering she's at the end of this 6 course treatment of chemo she looks really rough , I know the chemo knocks the patient about in many ways

Thank you for reading this if you can advise us please do, much Love to you all

Regards Brenda

Hi Brenda

I am sorry that things are hitting your daughter so hard.I do not have experience of her illness but i had the same problem with my weight when i was sick last time.It was not that i did not want to eat but that i did not feel like i could.The other thing i would add id that i did not see being so thin as much of an issue,whereas with hindsight i can see that it was.Being objective about yourself when reality keeps slipping and sliding about is surprisingly hard.This may sound stupid but i found it useful to take photos of myself on a digital camera.I did not have to get them developed but the camera does not lie and so makes me face certain things.The foods i found i could eat were quiona mixed with a little sauce like pesto and only small amounts in one go and dark chocolate and fruit,since then i have discovered raw chocolate and protein shakes.Good luck

Hello,

    I will give a sincere advice to go alongwith the treatment you are taking: i) completely stop drinking achohol, not even  wine or beer, ii) eat  nutritious  diet- vegetables, plenty of natural juices (not juice drinks), yoghurt etc and iii)  take the advice  that it is curable. This has helped me and I am now in control of my disease.

   If you like my reply, please confirm to me one thing - idoes the patient drinks alchohol on a daily basis?

Regards,

Ramana

29.03.2011

Hello All

I've not posted on here for a while but still logging in and reading your posts , How my heart aches for so many brave people on this site ,

Rosemary my daughter had her first 6 treatments of chemo , then had a pet scan which told us the scare tissue was still active and that she also had it in the spleen , and it looked like in the head ,

So it was suggested she had a Stem cell transplant the thought of this scared her to death , but she agreed to give it a go ,She went into hospital early May to have a line put in they couldn't get it in the chest but got it in the groin , Then they gave her an intensive treatment of chemo , the next day she had three fits , she was sedated for two days very poorly two days later she had four fits the poor soul was sedated again on both days of fits she had bitten her very sore tounge  , she has spent the last five weeks in hospital as she's been very poorly , unable to eat very little having platelets every day amongst other drips and pills she was so low she told the hospital staff and her consultant no more needles or treatment I want to die , the consultant told her he wont allow her to die, he sent an anithetist to put the canula back in that kept coming out also the line in her groin came out , how we don't know

Last Thursday we her next of kin requested an appointment with the consultant as to what's happening to Rosemary , he said another scan was not possible , her stem cell transplant was no longer an option , due to the chemo and her sore mouth and not eating she was now very anorexic has residual disease and not a candidate for further chemo treatment , all that was on offer for Rosemary now is palliative care

Yesterday she was moved to our local Hospice ( a very beautiful place ) they are being very kind to her helping her to eat and hoping to make the quality of life more pleasant this morning they gave her a jaquisi bath that she said was very nice , I am heartbroken I never thought I would see my 43 year old daughter like this , I am so busy during the day doing all manner of things including looking after Rosemarys 12 year old daughter filling in endless forms and all our domestic duties , now we have to think about closing her flat down , Its not till about this time of night midnight I sit and reflect on things and have a cry and read all your mails on here , This cancer disease is dreadful what it does to folk

Thought some of you might be wondering how we are getting on , I was hoping for better news to report

I am a christian myself and some days I now find it hard to pray , those of you who beleive in the power of prayer please pray for us , Thank You

Much Love to you all ...Brenda Hugs and XXXXXX

hi brenda

i`m so sorry that things are not going well for rosemary,and i know it is so hard to see a loved one in so much pain and distress,and my heart goes out to you all,so try to remain as strong as you have been and i will be thinking of you all and will pray for you all.

  love jeff . hugz to you all x

Hi, I have Follicular Lymphoma. I am currently on watch and Wait. I have a 2 and a half year old daughter and another in the way. I am 35, I would welcome any contact about this condition. Personally I think I am slowly going mad! I have had a tumor removed from my neck, another removed from my groin and am in surgical remission although I have lumps in my neck,groin and stomach...scared but FIGHTING.

Dear Brenda,

On behalf of everyone here at Cancer Chat, I'd like to say how sorry I am that your daughter Rosemary has passed away.

I'm glad to read that she died peacefully with her family around her. It sounds like she had wonderful care from the people around her.

Very best wishes to you and your family.

Renata

Cancer Chat Moderator