29 years survivor of WG; 11 years survivor of bladder cancer

[willsy]

Hi - I am a 68 yr old female from Adelaide, South Australia. I was diagnosed with WG in 1991. My left eustachian tube, both tear ducts, sinuses and lungs were affected. Treatment started with 85mg Prednisolone, 100mg Cyclophosphamide, Bactrin 2 x daily. This was the middle of July 1991. By the end of Jan 1992, I was taking 38mg Prednisolone, 100 Cyclophosphamide as well as Bactin. I weigh 50 kg. Soon my hair fell out, my torso and face puffed with Prednisolone. I wore a grommet in my left ear which fell out numerous times, had my tear ducts replaced, cataracts removed and lived with a collapsed upper lung lobe. The collapse was dangerously close to a major artery which is why it was left.

I had seventeen good years without any drugs before bladder cancer was diagnosed. This was caused by Cyclophosphamide. My cancer stage was initially T1G3. Bladder removal was recommended and 3 months after major surgery, bladder cancer was found to have metastasised to nearby lymph nodes. This altered my staging to T1G4 -( very frightening). A CAT scan did not find any other involvement. Radiation and chemo followed with its fallout of gut strictures and hair loss but the good news is that I am still around and in relatively good shape. My left lung collapsed totally last year (2016) and doctors were able to find their way into my v distorted left lung to enlarge airways and get the lung working again. This may turn out to be a six monthly proceedure.

:smile1:

[andrew]

Wow! You've been through the mill! Well done on pushing through all that :) You're a champ. I worry about bladder cancer too as I had about 12 months of Cyclo after leaving hospital. How was the cancer originally picked up? Regular testing or did you get new symptoms? Welcome to the group!

Andrew

[mishb]

Hi fellow Aussie, and welcome to the forum.

Yes, Andrew said it - Wow !!

No knocking this good lady down, hey. Good for you :thumbsup:

You must have some wonderful Sth Aussie specialists.

[Pete]

Welcome Willsy!! Wow! What a story.

i'm also concerned about bladder cancer due to 16 months on cyclophosphamide. I have a urinalysis every two months to provide peace of mind and an early warning...

[willsy]

Hi Andrew - I was told 10 years down the track from WG diagnosis that the disease had left my body. Hence no investigations were made re the possibility of bladder cancer so the first I knew of bladder problems was a sense of urgency and blood in my urine. Fortunately I had access to my respiratory physician which I used ASAP. He was the physician who treated me initially with WG and who gave me regular lung function tests. Dr. Bryant immediately suspected bladder cancer re my cyclophosphamide treatment for WG. He rang an urologist who I saw the same day. Bladder cancer was confirmed after a biopsy was taken.

[willsy]

Hi Misb - My rather long journey with the medical establishment here in Adelaide has left a lasting gratitude to our national health system which I believe is the best in the world and for the expertise of our medical profession. Nevertheless having said that - the patient must take an active role in his/her well being. I was 42 when WG hit me. Until this time I was fit and healthy. My husband at the time realised how very sick I was and he came with me to my drs appointments to act as a support. When a radiologist suggested I might have WG and I needed to get specialist help immediately, my husband stopped at nothing to get me into the system and into hospital. Hence I was in hospital the following evening. I was too sick to bat for myself so I want to pass on the importance of having a strong support person to pave the way for urgent help.

Similarly with my bladder diagnosis. By this time I was on my own but I had learnt to find my voice and I needed it to push emotion aside as I came to grips with the reality of losing my bladder. I saw two urologists and spoke with Dr. Bryant - all of whom gave compelling reasons re bladder removal. Bladder cancer is an aggressive disease so if you should be one of the unfortunate WG patients who is/was prescribed cyclophosphamide and things are not right with your bladder - get help ASAP.

[drz]

My urologist also told me bladder cancer after CTX use is an aggressive disease but there is no lab work to effectively screen for its development. A cystoscope to check the inside of bladder is only way to detect it before other symptoms appear like pain and blood. i have opted to do this on an annual basis for some additional peace of mind. CTX use and other parts of our treatment for Wegs also increase our risk of several other forms of cancer too. It helps to remember that if our risk of a certain type of cancer may be 3X or even 20X higher, that this does mean it will happen. Only that we should be more vigilant about the possibility.

The risk of bladder cancer is reported to be a higher risk for men than women by 3-4X. Older age is also associated with a much higher risk of many forms of cancer and that is one risk factor we all seek to achieve.

This study suggests that us Weggies have a higher risk of bladder cancer even without CTX treatment but still most people that are even treated with CTX do not develop bladder cancer.

http://www.medscape.com/viewarticle/537930

Higher dosages and longer term treatment do seem to increase the risk.

[dennis2512]

Greetings from melbourne my husband took cyclo for nearly a year in 2011 didnt put him in remission just made him sicker your post has reminded me of the importance of regular urine checkups

Sent from my SM-T350 using Tapatalk

[Alysia]

Welcome to the family, Willsy. You are miracles' collector :)
I also think that the weggies of Oz are doing the best compared to all other countries :)
May I ask how did they fix your collapsed lung ?

[willsy]

Hi Alysia - My total L lung collapse 29 years after WG diagnosis was a source of great interest among the thoracic unit at Adelaide's Royal Adelaide Hospital. Initially the drs were not sure that they were looking at a lung because of the way WG had distorted it. Several probings led to cave like dead ends then the very small probe began to enter an airway. My drs used a small balloon to coax an expansion of the narrowed airways. In doing so they released a huge amount of "muck". At the time my lung was silent eg I wasn't coughing. The procedure meant a general anaesthetic as the patient is not allowed to cough. The results were astonishing. I had lived with an upper L lobe collapse for 29 years and with advanced technology part of that collapse had inflated on a CAT scan in 2016. I went through our summer without my puffers but now that the weather has cooled, I need them. I am uncertain whether my current shortness of breath is a signal that the airways are closing again or whether my symptoms are a reflection of age. I will go back for a repeat of the above procedure in June-July and I suspect this will be a regular investigation. Needless to say I am now written up in the medical journals!!!

[MikeG-2012]

Needless to say I am now written up in the medical journals!!!

Always nice to have a celebrity on board in case we need one some time! LOL!

Glad to hear your story!

[Wegetarian]

Wow, sorry to hear you got hit so hard by Wegs & cancer. You sound like strong person, which is awesome. Even though it really sucks to get Wegs, it does help us to better understand our inner strength. do you agree? Even though it can be a rough ride, it does force us to grow as persons and I feel it has helped in better understanding other people too.

Best of luck to you :)

[Alysia]

Hi Alysia - My total L lung collapse 29 years after WG diagnosis was a source of great interest among the thoracic unit at Adelaide's Royal Adelaide Hospital. Initially the drs were not sure that they were looking at a lung because of the way WG had distorted it. Several probings led to cave like dead ends then the very small probe began to enter an airway. My drs used a small balloon to coax an expansion of the narrowed airways. In doing so they released a huge amount of "muck". At the time my lung was silent eg I wasn't coughing. The procedure meant a general anaesthetic as the patient is not allowed to cough. The results were astonishing. I had lived with an upper L lobe collapse for 29 years and with advanced technology part of that collapse had inflated on a CAT scan in 2016. I went through our summer without my puffers but now that the weather has cooled, I need them. I am uncertain whether my current shortness of breath is a signal that the airways are closing again or whether my symptoms are a reflection of age. I will go back for a repeat of the above procedure in June-July and I suspect this will be a regular investigation. Needless to say I am now written up in the medical journals!!!

Thanks for sharing. I am glad they were able to fix the lung collapse. Do you have a link to the article about you ?

[gilders]

Welcome Willsy.
You sound like a true fighter!

[PCrowle]

Willsy,
Your amazing story promps me to ask how long we can live with GPA in general? I was diagnosed a year ago, but had symptoms for about 2 years before that. I am 75 years old and, like others, felt that I had lead a fairly healthy life. My question is this. My mother lived until 103. Am I likely to make that age or will this disease or its drugs get me sooner? Appreciate any feedback! Thanks.

[drz]

Willsy,
Your amazing story promps me to ask how long we can live with GPA in general? I was diagnosed a year ago, but had symptoms for about 2 years before that. I am 75 years old and, like others, felt that I had lead a fairly healthy life. My question is this. My mother lived until 103. Am I likely to make that age or will this disease or its drugs get me sooner? Appreciate any feedback! Thanks.

Few people make it to 100 regardless of their health. But taking good care of yourself will probably help offset some of the negative influences of the drugs and disease. Having Wegs tends to makes us more appreciative of life so you will probably have more joy in your life regardless of how long you live.