On husband's behalf

Hi I'm new to the site and I'm posting on my husband's behalf. He began to be ill last Christmas, loss of appetite with stomach pain which went round to his back on either side. At the same time he had blood in urine and was diagnosed with bladder cancer. After an endoscopy, CT scan and ultrasound in January the bladder treatment began in February and he had 6 BCG treatments which finished in June. He has also been seeing a rheumatologist since March, who after blood tests and a PET scan, diagnosed vasculitis involving the mesenteric artery. The cancer and vasculitis are not related. We have been told that this is coincidental. He is on prednisone ...started on 60 mg and gradually reducing. Today we saw the rheumatologist again and he has arranged for the 6 doses of cyclophosphamide to begin in 2 weeks time. This treatment means that the BCG into the bladder (which should have restarted for another 3 treatments) has to be postponed. In the meantime he has had an annual review on his heart meds (heart attack 7 years ago) and a blood test has shown high liver enzymes. We are waiting for results of a second blood test. He has lost almost 4 stones in weight since Christmas and has been feeling very unwell for 8 months. This year has been very stressful for us both as he has never been so ill or inactive for such a long length of time. He is 68. I don't really know what questions I want answering but I wonder if anyone can give us a bit of hope. He says he feels that there's no light at the end of the tunnel. Will the cyclophosphamide bring the relief that he's desperate for? Sorry for rambling on but it's been very stressful for us both.

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  • Hi vee21,

    Sorry to hear about the awful time your husband has been having with his health.

    There are over 18 different types of Vasculitis, has your Husbands Consultant said what type he has? As the Vasculitis is affecting the mesenteric artery that might be one of the causes of the high liver enzymes.

    Vasculitis is a rare, complex disease. There are relatively few Consultants with an expertise in diagnosing and treating it. There are some very good multi disciplinary Vasculitis clinics around the country, as your husband has the bladder cancer as well it makes his case more complex and I hope he is being managed by a Consultant with excellent Vasculitis experience.

    Have they discussed the risks of Cyclophosamide with you both as regards bladder cancer?

    You are welcome to phone or e mail the VUK Helpline to talk things over or for advice. It's difficult to be more precise without knowing what type of Vasculitis he has.

    vasculitis.org.uk/helpline

  • Hi...Thank you for your reply. We haven't been told what type of vasculitis he has. We see a rheumatologist at St Lukes Bradford. I asked him how many people he sees with this disease and he said that it was very few. The rheumatologist has had meetings with the bladder consultant who has agreed to postpone the bladder treatment but, no, he didn't mention any risks to the bladder.

    .

  • Please do phone the helpline, it's really important to pin down the type of Vasculitis your husband has to get the best treatment options.

    High doses of Cyclophosamide are a risk factor for bladder cancer. The Consultants have probably taken all that into account and made a clinical decision but I am concerned that they don't appear to have discussed it with you both. Please don't think I am saying the treatment is wrong, just that you need to have all the information to hand to make an informed choice.

    Leeds is just up the road from you and the Consultants there are experienced in treating and managing Vasculitis.

  • Hi.....why is it important to find out the particular vasculitis? Just wondering.....

  • Because the differing types require slightly different management and have their own guidelines. Being unable to give you a definitive diagnosis can sometimes point towards lack of experience on behalf of the Dr. Cyclophosamide isn't indicated for many variants of Vasculitis.

  • HI I am sorry to hear about your husband. I too have abdominal pain with severe digestive problems along with other systematic symptoms. My blood tests also showed elevated liver enzymes. I am very wary that I have vasculitis, but unfortunately I have not found a doctor knowledgeable enough about the disease to look further into it because most of my bloodwork is normal so the doctors seem to wrongly believe I am healthy. Sorry I cannot answer your question but just wanted to let you know that I wish your husband the best.

  • Hi Matt.......than you for your reply. You must keep bothering the docs. My husband's blood tests were all normal at the start of the year and it was the scans which highlighted his problems. I hope you get the treatment that you need.

  • As Keyes said calling the vasculitis uk helpline is probably the best option. Cyclophosphamide is the most common of the immunosuppressants as first treatment. I had 6 infusions over 3 months and started reducing my preds after the first one. 19 months after starting treatment I am on 5mg prednisolone and 150mg azathioprine and I am feeling good. I think though that cyclophosphamide is linked to bladder cancer so it is worh talking to someone with better knowledge than me.

    Call the helpline!

    Wish you the best of luck!

  • Thanks for the reply. Zoe. I have a feeling that this disease won't be going away quickly.

  • Vasculitis is a chronic autoimmune disease. It never goes away but people get in remission. Finding a doctor with vasculitis knowledge is the key.

    Vasculitis UK website has plenty of information and as I said a call to the helpline will be a great support for you!

  • Hello Vee21: I was diagnosed in April of this year, after a month in hospital, I could not walk, muscle neuropathy...still recovering ...on Cytoxin, I've had 3 infusions of 6 ordered but had to postpone the upcoming set of 3, I was too ill to have at the time. Also, my WBC has bottomed out, thst delayed one treatment of Cytoxin My rheumatologist also had me receiving plasma Pheresis while in hospital. Just got out of hospital a few days ago, 2nd stay this year...1 week this time...endocarditis MRSA family, now home on infusions of Daptomycin. Hopefully, I'll finish that today, 4 weeks total....of a very strong antibiotic. I wish I could offer you a post of cheer ....that has not been my experience. I'm 67, just had birthday...was told I have Lupus, Sjogrens and Raynaud to go with my microscopic Polyangitis MPA....also told if I didn't take the chemo I'd probably not live 2 years. Some days that seems like the better deal. I'm in much pain, just got off dialysis and not planning to go back, unless that pain is unbearable. I don't mean to sound ungrateful, I'm not....but I'm so tired of the sickness, horrible drain and pain. Also, I've developed a tremor, a horrible full body tremor, driving me insane..seeing neurologist Wed upcoming. I'm continually running low on iron, had 5 transfusions to present, also,calcium deficient so badly..I was displaying symptoms. On prescription Calcium, still running low...for some reason my body isn't metabolizing correctly and looking at iron infusions if not rectified by end of month. I'm going to stop, if I can answer any questions for you, I'll gladly do so. There's a lot to learn with this disease, all in that Vasculitis category and they are many. Good luck...your husband is fortunate to have you advocate on his behalf, that load does get heavy.

  • Hello and thanks for the reply . This disease is certainly a strange one and I'd never heard of it before this year. It's knocked my husband off his feet. He retired from a manual job 2 years ago, has always been fairly active and has been a fisherman since his teens. Since Christmas he's done virtually nothing because of the stomach discomfort and tiredness. Thank you for your concern and I hope you get your symptoms under some sort of control.

    I dithered for weeks over joining this forum and asking for the advice which has been difficult to get from the consultant and I think, now, it's because he doesn't know enough about the disease. I'm not decrying him. I believe that he's tried his hardest for my husband but the specialist knowledge is not there. Thanks again and good wishes.

  • Welcome to this difficult situation. I am also the wife of the husband who has been ill with Vasculitis since Oct 10. I cannot take his illness or pains away, but what I do is give him as much support as possible. I keep all the records of appointments, treatments, list all his medications, take all the phone calls from hospitals & doctors. We have had a bit of a role swap at home, he does the things he can, and I do the things he can't. Anything more than that, I've found a 'Handy Andy' who 'does'. I do all the driving which I always did prefer but he gets to do the ironing which I never did like!! It might be a long road, but there is light at the end of the tunnel, you've just got to stick with it and look for the positives. Good luck in your journey.

  • Hi I've also kept a similar diary. I found it a necessity to keep track of all appointments and treatments. Thank you for your encouraging words.

  • Hi Vee21

    So sorry to hear about the pain your husband is going through. The only thing I can stress if you haven't please get in touch with the helpline. I have just been diagnosed with Vasculitis and if it wasn't for Lynn on the helpline I would still be suffering. Within 1 week of getting in touch she had managed to give me all the information required to see a specialist in Leeds , receive my diagnosis and start treatment ( currently laid in my hospital bed at Jimmys) this had been going on for 3 months prior and from what I quickly found out consultants without much experience in this area are reluctant to make any diagnosis even if the evidence is staring them in the face. (My personal experience)

    Hope everything works out

  • Bravo Ian

    Regards

    ⚽️

  • Cyclophosphamide and big doses of Prednisone are the familiar things that started most of our treatment. For me they made a big difference and started me on the road to recovery. Wishing you all the best.

  • I have MPA and I am treated at St Lukes hospital Bradford and have been more than happy with the treatment. I have had cyclophosphamide, prednisalone and more recently Rituximab. If you have any queries the rhuematology department have a helpline and very knowledgeable specialist nurses. I also run the West Yorkshire support group and am available for a chat if you want some details of how to contact them.

    Hope all goes well and he is soon on the road to recovery. It is a slow one though so be prepared to have a lot of patience.

  • Thank you Lynne. I didn't know that St Lukes has a helpline.....to be honest, the info we've been given has been sparse. I've asked questions but the answers have been vague. My husband did not get any medication until he'd been going to the clinic for 6 months, but I realise that the bladder cancer treatment held this up. Patience is a virtue but sometimes I'm not very virtuous! Thanks again.

  • Lynne. ..what's is MPA?

  • Hi vee

    MPA is microscopic polyangitis, inflammation of the small blood vessels. I had a bad chest infection following a flu virus. I lost my voice for 6 weeks. This was in March 2009. I thought I had recovered but I was loosing weight but as I was going to slimming world I didn't pick up on it. Just thought I was doing well! In November I started to loose feeling in my left foot, then a month later it started in my right foot. All this time I was getting weaker and my GP was doing blood tests but they just showed inflammation and so it went on till March 2010 when I lost use of my left arm. At this point we panicked and went a & e . I was admitted to renal as i had problems with my kidneys and then transferred to rheumatology. They did a kidney biopsy and I was diagnosed. Treatment was 10 doses of cyclo and high Prednisolone. Then maintenance tablets of azathioprine. I got into remission after a year. So you can see it was quite a slow process but after a few ups an downs I am fine at the moment.

  • I think the consultants are so busy thinking about your case they forget to tell you. If you need the helpline you ring appointments and ask for a call back. The last time they ask was it about the illness or medication and then arranged a call back time. It is usually within a week if not desperate but I am sure they would be quicker if you needed. After my last consultant appointment, Dr Ash said she would leave the next one for 4 months but if I feel I am flaring I can ring up and will be able to get appointment sooner. I have in the past rung to query my steroids, or if I haven't been sure about doses etc or tofind out about my blood tests. They have always been helpful and put my mind at rest. If I remember correctly I found out about the helpline when I had my first dose of cyclo. Hope this helps. If you need phone numbers private message me. Just wondering if the consultant meant he hadn't seen a case of that type of vasculitis which ever it is, as I know there are quite a few of us with vasculitis of different types that go to St Luke's. I also am under the chest clinic and they are very good at liasing. In fact when I was last in hospital with an infection Dr Ash came to see me at the BRI in the infectious diseases ward. I was very surprised😃

  • Thank you Lynne. My husband and I were talking about his forthcoming cyclo treatment today and we thought we would get more info from them and you've more or less confirmed this. We also see the bladder consultant before he starts treatment and have quite a few questions to ask him. We were also seen by the infectious diseases consultant. He was very good and it was him who told us that it was the mesenteric artery and the gut which was causing the problem.You have a different rheumatologist to us. Your words are encouraging and we've had a talk today about looking forward instead of dwelling on the here and now. We need to realise it probably will be a long road but there is a light at the end of tunnel. Thank you.

  • Hope it all goes well for you both

    Every case is different and I can only speak for myself but from what I have learnt a positive attitude helps a lot. Keep asking questions and looking forward and don't hesitate to contact me if you think it would help.

    Best wishes

    Lynne

  • Dear Vee

    How I feel for you and your husband

    It's terrible when you are dealing with several very serious medical diseases at once and they fight with each other

    I am a diabetic on insulin and last year I had bowel cancer

    I almost died because they put my bowel change down to the diabetic meds and I ended up in A&E 29 hours of surgery 3 days life support and then 7 days in Intensive care

    I also had septic shock

    Then they diagnosed grade 3 cancer but thankfully confined to the bowel they removed

    So now equipped with a Stoma bag I went home to embark on chemotherapy (I live alone)

    I survived that but the diabetes was poorly controlled and I've been left disabled due to neuropathy in hands and feet and now vascular damage

    I was feeling lucky by July but then I had falls felt fatigued and had a head ache in my temple plus chest pain

    Yet one of my many trips to hospital where they suspected Giant Cell Arteritis which was confirmed by a temporal biopsy

    I'm on 40my a day of Predisilne

    I'm just so grateful it was picked up quickly as losing sight would make my life very hard

    In spite of all these troubles I'm still so grateful to be alive but my life has changed a lot

    I now feel happier in my home where I feel less likely to fall and take great pleasure in routine and simple things

    I'm 67 and worked until last year but now I will retire

    It's very hard having serious health problems it changes your outlook on life

    In many ways I have more understanding but in others I take no prisoners now and trivial things don't annoy me

    Your husband will value your loving support and care but he will be going through things it may even be hard for you to fully understand

    Just love him and be there for him I'm sure that's enough

    Best Wishes

    June

  • The link to the NICE guidelines for Rituximab in ANCA associated Vasculitis. One of the criteria for being treated with Rituximab, as opposed to Cyclophosamide, is if the patient has had bladder cancer.

    nice.org.uk/guidance/ta308?...

    Just one of the reasons why a definitive diagnosis is so important as it can be the passport to the most up to date treatment available.

  • Vee21 my husband John has a type of vasculitis called Granulomatosis with Polyangiitis and he was also diagnosed with bladder cancer. It is essential your husband is seen by Doctors who know a lot about both vasculitis and bladder cancer. My husband was treated for both by a multidisciplinary team, eg: they had meetings about my husband before any treatment or surgery was done. If you would like to talk to John or your husband would like to talk to John the number you can reach him is 03003650075. Please do give him a ring. My husband was diagnosed with vasculitis 15 and half years ago and with bladder cancer almost 10 years ago. The bladder cancer was caused by the accumulative use of cyclophosphamide over a long period of time. As I have said above it is essential your husband is seen by doctors who have experience and knowledge of both.

  • Alternatively, if you prefer to write , John's email address is John.mills@vasculitis.org.uk he is chairman of vasculitis UK. He not only has experience of both bladder cancer and vasculitis he is in contact with many doctors who know a lot about vasculitis too. Both Keyes and John come from medical backgrounds too.

  • Hi just an update....The cyclosphamide treatment has been cancelled. It should have begun today but further blood tests showed that liver enzymes (what are they? I haven't a clue) are still high and rising and has meant he can't have the treatment. We are in the position where he can't have BCG because of prednisolone as it makes the BCG ineffective and he can't have cyclophosphamide now because of liver enzymes. We have an appointment this Monday to see the gastro consultant about the liver and another straight after to see the infectious diseases consultant. We've seen him once before and he's been brought in because the BCG treatment is a TB virus. I will update again after we've seen the gastro man on Monday. We're desperately wanting something to be done to relieve his constant fatigue and stomach discomfort but realise a liver scan will be required first.

  • Vee, I think the above is even more reason to seek a referral to a large, multidisciplinary centre such as Leeds who deal with a lot of Vasculitis and have much better experience.

    Deranged Liver enzymes show up in the LFT ( Liver function test ) blood tests. They are an indication of how well the liver is working, it has a big role in metabolising the body's waste products. It may be the Vasculitis which is affecting the Liver especially as your husband has abdominal involvement.

    Di you ask specifically about the effect of the Cyclo on the bladder cancer?

  • Hello Keyes. .....Unfortunately we have been told that my husband has pancreatic cancer. Another ct scan was done last Wednesday after seeing the gastro consultant on Monday. We were given the results later that day. It's inoperable and there will not be any chemo as they said there would be no benefit from it and he will be more ill. There is a MD meeting at Leeds this Wednesday and we see the gastro again on Friday. He is to have a stent put into the bile duct next week to drain the bile as he is jaundiced. The last scan he had before the ct scan last week was a PET scan in late March and pancreatic cancer did not show on that one. He still has appts to see the rheumatologist and bladder consultant and he will keep those. We've been knocked sideways by the diagnosis as you can imagine. We're facing a very different future than we thought we would have. I know that this cancer is not easy to spot in the initial stages but the drastic weight loss and stomach pain and loss of appetite ( before he began steroids) should have rung alarm bells. Anyway, this is where we're at and we have to deal with it.

  • So very sorry to hear that news, how devastating for you both.

  • Thank you Keyes. xx

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