General Chat

You're welcome Carol.

Brenda, I googled it.... it looks soooo promising! I will keep everything crossed, and send your whole family my positive thoughts for your DiL. And to those who are treating her. May their skills bear fruit.

(((((hugs))))) for you, as well. It must be even harder, as you are so far away from your family right now.

Love

Daff xxxxxxxx

Hi Puss, love to you and your dad, hope all goes well..sylvia

Had a message from my son in Oz yesterday afternoon that my d.i.l has had the results from her scan and it is confirmed that her cancer has gone to her brain.I had a long chat with him,and he says she is very calm.
Apparently her cancer is...Triple negative aggresive .It is genetic,but strangely her mother and older sister have both had a double mastectomy as she has,but it is not the same type and they are OK.
Her tumours are 2 grape sized one in her pons and about 4 smaller ones further up.
She starts this new radiotherapy next week with the Cyber knife which is a pencil thin laser that gets directly to the tumour without harming healthy cells around.
I had already sent him the link that I read about in the Daily Telegraph last week about this latest treatment that is only just beginning to be used in the UK.They obviously have it now in Melbourne.
I will hopefully speak to him tonight,but he says not to worry,she goes out on her bike for a ride every day and although on steroids as well as pain killers,they are leading as normal a life as they can with the children.
If any of you want to look up about Cyber knife just google it and quite a lot of info comes up.

Good luck for stepdad on the 17th.... xxx And for you on the 21st.... xxxx

Carole, one other thing, and I can't stress this highly enough!!

While your friend's dad is going through his treatment, his family and friends MUST keep away if they have a cold or similar... or if they have been in contact with someone who has.... and chicken pox!!

My R was like a rottweiler on the doorstep.... and those who were invited in were asked to use the handgel before coming in to me..... his immune system will be shot to pieces... more so than those with other types of cancer, because his lymphatic system is the system the cancer has attacked... he is likely to have a very low blood count for at least a part of the tim.... and needs to be kept as reasonably free of infection as possible. Read the leaflets etc..... and follow the instructions. It really isn't scaremongering, and can be the difference between life and death, literally.

I'll know better once you find out which Lymphatic cancer he has... the treatments are different... but the consequences of infection are very severe... trust me, I became an expert, lolol in spite of R's vigilance.

Annie, I can go along with the paracetamol.... but would you do me a HUGE favour, hun? Please check with your consultant.... or phone your specialist nurse... NOT any old nurse at the surgery (not wanting to be disrespectful, I have 4 sisters who are excellent nurses, and my mum who was an excellent nurse but they usually know very very little about Leukaemia, just the basics)... but just to put my mind at rest... lol sorry to be such a broody hen!.... but please check on the Ibuprufen... especially as you have the little nose bleed ongoing.... I know you have CML, but it is similar..... and I now have a little niggly itch of worry at the back of my mind.... you need to get to your doctor anyway, to get advice on stronger painkillers..... even if you don't need them all the time, I know how it fluctuates, the pain, and there are times when you will need something stronger/different. It is good to alternate, anyway, so that you don't get *used* to one.

Love and ((((hugs))))

Daff xxxxx

Love

Daff xxxx

Hi Puss,

Glad everything went O K for you at doctors.

Hopefully your dad will start to feel more comfortable now those horrible staples have been removed.

Good to hear some good news ..
Marilyn x

nurse dont think it anything to worry about but see doctor on 21st cause it has changed texture

dad had his staples removed today the swelling and soreness is going down
he has a follow up on the 17th please dont come back with bad news, as consultant who removed 2nd tumor and lymph glands in groin said it was a succsess and he had got it all xx

how are you all today xxx

i get my mole checked at 520 today remember everyone slightest change or colour get it checked xx

I didn't have my codeine at work one day and had a massive headache and I went to the pharmacy across the road from our building and spoke to the pharmacist and explained my situation and what pills I was on and he said that I could have ibuprofen. He gave me a box of nurofen plus which is ibuprofen and codeine.

My specialist at the hospital prefers that I stay away from paracetamol as this can interact with my chemo pills and cause liver failure. I am pretty keen for that not to happen so I stay away from it.

I have asked dad to consider seeing a solicitor, even me reading his notes can see the word carcinoma in situ, which means precancerous cells are there and could/are turning cancerous, that was in 1996 so the least they could have done was see him regular and prevented a total penectomy, I'm hoping the fight to get answers will stir him into fight mode, his chances of lasting 5 yrs have lowered dramatically because its cancer returned ( i think)i need to check it out, even his consultant now wants to know why he wasn't referred earlier, i think his survival rate is now 50 % again i need to double check this he doesn't know this yet i guess when he goes back next week he will be told, im so tired now so off to bed , i hope you all have a wonderful sleep xxxxx
SORRY ABOUT THE I THINKS I WILL DOUBLE CHECK TOMORROW OFF TO BED XXXX

No.... but only because I chose to take it no further... I went to the surgery and had an interview with the practice manager. She is lovely.... the receptionists have now had specific training, and one has left the practice. I will not have to be seen by the senior GP except as an emergency.... and they are very aware that I have very good grounds for taking it further. I don't want to do that..... but she has never apologised. And I think that is what I want and need.

I will do it... I will have all my docs in the next couple of days, and I shall look through those and take it from there.

Love

Daff xxxxx

ps.... the new GP there is lovely and I have no probs with him at all xxxxx

Daff have the doctors been reprimanded for failing to care for you before you wewre diagnosed xx

Hiya Annie... yes, the side effect of many of the painkillers can be headaches.

I had a bit of a problem with telling my GP what I needed him to know... and I am very articulate.. I just seem to fall apart in front of them, even though this new one is lovely and very very approachable. I also wanted ALL my niggles recorded.... so... two weeks ago, I typed them all and saved them on my hard drive and an external hard drive... I took them to the Dr and handed it to hoim... I told him that I know I waffle and don't get to the point quickly... so to save time I had written everything I was concerned about, and wanted him to read it, and sign it, and attach it to my file. He was very good... and did all that... dated it, and went through everything item by item.

So.... write it all down. Take it to your next visit.... make sure your gp, and your specialist have a copy... and insist your gp and Haemo discuss those concerns with you.

I have the bone pains too.... I take a mix of drugs, depending on how bad it is... for two days this week I didn't need anything.... but will need to take something soon as I have been running around with my granddaughter. Well, she was kind to me because she knows that at 5 I am very old, lolol

I assume you can't take ibuprufen.... most Haemotologist depts ban them..... I can't anyway as I am allergic. But ask about stronger painkillers for the times codeine alone just won't work.... I use Paracodol, which is a paracetamol/codeine mix..... ask your gp or Haemo about them.... please make sure you check with your clinic/surgery first. Ibuprufen/aspirin and Nsaids are usually a no no.... they can increase bleeding, and with CML, you can't take that chance.... For the very very bad days I have a much stronger drug... we call it Oxycodone in UK.... I am not sure what it is called over there... but you do need to be careful, it is morphine based and very powerful.... and can be addictive. It is a controlled drug over here. But I need it for a couple of days every so often when the pains are really bad.

The problem with our Leukaemia Annie is that when we research, all we find are the bad things... the people who haven't made it, the worst case scenarios.... even the help sites sometimes have chatrooms that seem to be full of *in memory of* and it can be difficult to find folk who are surviving, and doing well, with our cancer... so it does put you off researching. But we are surviving, and look at us! Doing it so well. too. But I do know people from clinic who are in their 70's and 80's, who were diagnosed with CML 30 and 40 years ago... and still just having check ups! That really gives me a boost. Even though I had AML, not CML.

It is the fact that I wasn't listened to that has made me so angry.... not the illness itself.....

Good luck, and pm me or report back here when you have had your next appointment.... and I am happy to look at your list and suggest things as well. if you pm it... no need to put it on here if you don't want to.

Take care, and loads of ((((((hugs)))))

Love

Daff xxxxx

hi Annie your GP needs to know how you feel so he/she can change there attitude its not fair when you have been through so much, why are they doing that job if not to care, i will never get my head around snotty snobby doctors who are more concerned about there golf meetings, i would make it clear and start of your consultation that you need doctor to listen as in really listen tell them your scared your anxious who wouldn't be , and if your pain relief isn't helping ask for something a little stronger did you know a side affect of codeine is headaches of all the things, i really hope they listen to you and make you feel better about what is happening good luck at your next appointment xx

Daff

I have so far only been prescribed codeine for the headaches. I also take this for the bone pain that I suffer as well. I hadn't thought of nose bleeds as being part of this until you mentioned it in your comments as have been having a few of them lately, they aren't bad, I would say just annoying as I can't stand the smell of the blood now. Sometimes the headache seems to be located to one place and other times its all over.

I quite frequently get a biit confused and forget what I am doing and sometimes it takes a while to think of things I want to say or do which is really frustrating.

I have told my doctors about the headaches but they seem to be not overly interested in it although they do note down everything I tell them. Sometimes I feel like they are so busy and overworked that they don't want to spend too much time discussing my concerns, this is more related to my gp rather than the specialist. I tend to get quite upset when I feel they are fobbing me off. I just want them to listen to my concerns and discuss them with me.

Annie
xxxxx

I remember you going thro the doctors thing daff so admire your courage to prove them wrong i often relay it to dad that he must find as much out and to why he was not treated for this in 96 xx

Thoughts for Mildred and the family of her freind xxxx

Well done Puss.... now that she has taken the first step, your sdad will find it easier to do so for himself when he sees how much support she is getting, and how much even that will help him to start coming to terms with it..... but tread gently, lol.....

He is likely to go through all the stages of grieving.... and it sounds from some things you have said that he has done/ is doing the denial and now has the anger.... I have the anger now too... not at the cancer... I drew that straw, so I will live with it... but I am so angry with my doctors for not believing me.... they gave me the blood tests to humour me, not because I was believed. Your Sdad had that, and the most feared male cancer which hits at the core of their masculinity and is so treatable in most cases as a result.... he is bound to feel very very angry... even if like me, he doesn't know it yet, lol

Yes, Rita... I think that many certificates would also have put pneumonia down as well.... caused by the cancer, but where the cancer has not directly been the cause of death.... my grandad died of pneumonia, but the fact that he had stomach cancer was recorded.... my aunt had bowel cancer, which wasn't recorded as the cause of death... the pneumonia was... but the cancer caused debilitation to such an extent that they developed pneumonia.

Mind, this was in the 50's and 60's, and treatments have improved so very much now.

Love

Daff xxxx

five members in my family who had cancer have Carcinoma on their death certificates
as LPC has stated it is on all types of cancers ..

Rita

Carcinoma
Classification and external resources
OMIM 8010/3
MeSH D002277

Carcinoma is a medical term that refers to an invasive malignant tumor consisting of transformed epithelial cells. Alternatively, it refers to a malignant tumor composed of transformed cells of unknown histogenesis, but which possess specific molecular or histological characteristics that are associated with epithelial cells, such as the production of cytokeratins or intercellular bridges.

Carcinoma in situ (CIS) refers to a small, localized focus of carcinoma that has not yet invaded through the epithelial basement membrane that delimits the carcinoma cells from the adjacent normal tissue. It is important to remember that carcinoma in situ is a pre-invasive cancer, and not a "pre-malignant" entity.[1] In most cases, CIS will progress to an invasive carcinoma unless it is completely removed via surgical resection, cryotherapy, or some other treatment modality. In some instances, however, CIS can regress and even disappear, a phenomenon often linked to negation of the original carcinogenic stimulus

A support team member has been on the phone to mum, they are offering her support too now which is good xx