TOLD I HAD LUNG CANCER BUT IT WAS WEGENERS

My God! ...you have had it rough!

To be told you had lung cacer first?.My experience with wegeners(which you can read about in \"Diagnosed in Nov 2009\" was all related to joint pain which was being put down to arthritis, also my left eye flared up followed by severe headaches...... but again looking at some of the experiences like yours i've got off lightly (so far)... at the moment i feel good except for continious fatigue/tiredness

Mepper

I spent ove 8 years with an undiagnosed cough sinus problems and constantly unwell then i became very breathless had a blood test which showed my iron level was so low I needed a blood transfusion, I spent 4 weeks in hospital having x rays biopsys broncoscopys before being diagnosed with this disease, I have treatment with large doses of steroids and Cyclophosamide along with other drugs to counteract the side effects, I am seen by 3 different consultants, Renal, Chest and Reumatology, all though I still feel exhausted and beathless I have improved a little and I expect it to take time.

I am glad to have a diagnosis after all this time and Im sure with patience and all the care i am getting things will get better.

My dad started to have nose bleeds in September lasyt year and kept being referred to ENT clinics. However, in March he had to get an ambulance has he could not stop his nose bleeding. once it stopped they sent him home with some cream. Then it happened again this time they did a biopsy on his nose. However, whilst waiting for the results he became breathless. Whilst in HDU he was diagnosed with Kidney failure and is noe on dialysis permanantly abd his mobility is poor. I was shocked at what this disease does to people and how it effects peoples life. My dad has just finished the Cyclophosphamide so i am hoping he will start to improve soon. I would appreciate any extra information anyone has on this disease and also on kidney failure.

Hi Ganor - You will feel better in a few month's time. You may like to read my details, which I posted on this site on December 5th last year. I started treatment June 2009, which was similar to yours, ie massive doses of prednisolone and 6 courses of cyclophosphamide + other drugs and now I am much better, though get tired quickly. I still go to the hospital for frequent checks and am on the road to remission. So keep your chin up and think positively. Regards - Mo Grant

it takes time i found out i had it in dec 2008 had chemo for 8 months in 2009 and at the time i did not feel like it was doing any good. in march this year i was told i was in remision it was like my life after so long been so ill had a kick start i did not feel half as well as i was before i took ill but i did feel better, i used to shuffle to the bathroom every morning my body legs and feet hurt so much, i lost my dog 2 months before i got ill and last year got a puppy my husband had to look after him it was to much. in march this year i started to walk him every morning and the only day i have missed is when i was taken to hospital as my knee had dislocated the next day i was back out with him splint on knee and cruches and all. i do feel a lot better now one morning i sat up in bed and just realised how much better i felt, its a long slow process but its all worth it still get sick sores at the side of my mouth my feet and legs swell and often feel a lump in my chest that last for weeks but im alive and now stupid as it may sound i want to do a 5k charity run for cancer or a diabetic cause my family are supporting me even though i know they think i have now totaly lost it, you have to keep going in life do as much as you can and dont let the illness take over where possible i nearly died 2 years ago sorry wegners you not going to beet me yet im not ready to give up

Dont give up is great advice. My experience is headed Personal experience of Wegeners. I have just done 16 miles on my road bike flat out and raced a guy and won. Left him spitting. Life is good

I have just been told that i have bowel and bone cancer as well as wegeners in the lung at the moment treatment has had to stop for wegners until they know what they are going to do about the cancers.

Dear Ganor

I am so sorry to hear of your recent diagnosis of bowel and bone cancer thatis just awful I hope you are able to get some treatment to helpyou. How did it come about have you been unwell other than dealing with the wegeners and is there any link to the wegeners i doubt it but just curious.

Take care.

Hi Ganor

I was so sorry to learn of your latest diagnosis and sincerely hope you will respond well to treatment.

Kind regards - Mo Grant

Thanks but worse is to come was told today that I have lung cancer.Doctors say they dont think it has anything to do with wegners I had test done on my bowel because of diarrea and bleeding which docs said was because of meds but results came back poisitve .At same time i had bad chest infection was admitted to hospital for month once they started the tests they said it could be cancer or wegners 9 weeks on they are saying its cancer still in shock because of what happened last year I am seeing oncologist next week

Dear Ganor

I'm so sorry to hear of your latest diagnosis and all I can do is to hope that the treatment you receive has a positive effect. There is always hope - during 1984, I was diagnosed with malignant melanoma in my right eye and this was confirmed by 5 surgeons in my local hospital and I was given 6 months to live unless they removed the eye. They told me that it had already started to spread to other organs in my body. I couldn't come to terms with losing an eye and my wife arranged for a second opinion. This consultant confirmed that I had a cancer in my eye and he had developed an operation, together with a Professor ******* ****** at ******* University, to remove such tumours. Consequently, I went to Glasgow to the Western Infirmary and had the operation. Although I have restricted vision in the affected eye, I still have it! There has been no sign of the return of cancer, but sadly, I contracted Wegener's last year, but am fighting this disease as well.

Please let me know how you get on and I will be thinking of you.

Regards - Mo Grant

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thank you for your kind thoughts saw a ongiligist yesterday and was told there is cancer in the lung and has been there since last year wegners masked it i am so confused by it all starting chemo next week

best wishes ganor

Hi Ganor

I send you my very best wishes and sincerely hope the chemo has good results. Keep your chin up.

Best regards - Mo Grant

thank you for your best wishes and kind thoughts had first chemo yesterday it wasn't as bad as i thought had a good night sleep last night going to have a sleep now .my consultant has had to stop treament for wegners and he hopes the chemo for cancer will cover it who knpws regards ganor

Hi Ganor

Just seen your posting. I'm so pleased that your first chemo treatment went well and that you managed to have a good night's sleep. As a matter of fact, chemo therapy is one of the treatments for Wegener's, so your consultant may well be right. I had six intravenous sessions of cyclophosphamide which is a strong anti-cancer drup which tends to arrest Wegener's in its tracks, together with the other medication.

Your doing well Ganor - keep it up. regards - Mo