Vasculitis and Cancer

[Suzym2u]

Has anyone been diagnosed with Vasculitis and then maybe a few years later been diagnosed with cancer?

If so what type of cancer? did it come on quickly and/or aggressively?

[Gjw62]

Hi Suzy I had it the other way round kidney cancer first then vasculitis hope this helps

[Hidden in reply to Gjw62]

Me too, I had breast cancer followed immediately by RV (Rheumatoid Vasculitis)

[Suzym2u Moderator Vasculitis UK in reply to Gjw62]

So Vasculitis came secondary to the cancer?

[Gjw62 in reply to Suzym2u]

Yes sorry for delay had bypass inbetween as well

[michichgo]

Six years in with MPA and so far, no cancer. MPA is already more than I can handle!

Best wishes for good health.

Michele

[Hidden in reply to michichgo]

When I was diagnosed with Vasculitis, I would have gladly swapped back to cancer!!!

[Hidden]

Hi, I was diagnosed with GPS in 2005 and then DCIS breast cancer in 2013. It was" removed " and followed with radiotherapy but returned in 2015. Again I had a VAB to remove it as they did not want to give me a general because of other complications. It returned in 2017 and I finally had a mastectomy.

[Suzym2u Moderator Vasculitis UK in reply to Hidden]

Thank you for sharing , it must have been a very difficult time for you x

[Hidden in reply to Suzym2u]

It has been very difficult but my faith and amazing husband who is now my full-time carer have seen me through

[Hidden in reply to Hidden]

breastcancer.org/symptoms/t...

Sorry to hear you had this, I had grade 3 stage 2 Invasive ductal carcinoma. It spread to my lymph nodes and blood stream. I had a mastectomy and Chemo, but refused radio as I have lung disease and at high risk of having lung fibrosis. There is a 5% risk of my cancer returning and spreading.

[ndstephens49]

Yes, Suzym2u.

I was diagnosed with a huge breakout of Vasculitis on my skin in August of 2000.

In December of 2000, I was diagnosed with stage 4 non Hodgkins B cell lymphoma. I started chemo ( adriamyosin and Rituxan ) in January 2001. Still in remission from lymphoma.

I had been previously diagnosed with APS clotting disorder.

In August, 2014, diagnosed with CVID- Common variable immune deficiency- defective B lymphocytes unable to make normal antibodies needed to fight infections. . So every four weeks get infusions of IVIG.

Just started following this group.

Nancy in West Virginia

[michichgo in reply to ndstephens49]

That's a lot to handle, Nancy. Sending good, healing vibes your way.

Michele

[ndstephens49 in reply to michichgo]

Thanks michichgo, I guess it is. But have to deal with it. It’s been going on since 1988.

I’ve researched vetted medical journals and cannot find another person with APS, vasculitis, and CVID. I can find APS and Vasculitis in one person. But not with CVID.

I’ve traveled to Cleveland Clinic (CCF) and John’s Hopkins multiple times. Also many medical facilities in other large cities. Most of what I have was not diagnosed there or in the big cities but here in Huntington, WV.

I’m feeling like my doctors may be missing an important treatment method for these three diagnoses. They try really hard, but my situation is overwhelming for them.

I recently discovered the NIH in Bethesda in conjunction with New York Post and Dr Lisa Sanders has some type of mystery diagnosis program where they research a patient that can’t be diagnosed. And Dr Sanders reaches out to the public through her column for ideas. Unsure if I am eligible, but thinking about it.

Thanks for your healing vibes.

Nancy in West Virginia

[cazy-g]

Hi Suzym2u Had G.P.A for 9 years with all the relevant treatments including cyclophosphomide 10 pulses 8 years ago . Just been diagnosed with type 3 bladder cancer with treatment now commenced 5 weeks ago and ongoing .

[Tbrz in reply to cazy-g]

Hi, I am so sorry to hear about recent cancer diagnosis on top of vasculitis! Life is very cruel at times, I hope your treatment goes well.

May I ask a question, if not too intrusive, please feel free to not answer if too upsetting; but, what were your symptoms and when did you notice, because ever since I had the chemo treatment my bladder has not been the same. I need the toilet more frequently, I get bloated and it often hurts, it just doesn’t feel the same.

Anyway best wishes to you.

[cazy-g in reply to Tbrz]

Happy to share ,I had the feeling of what I can only describe as stones in my bladder and a stoppage when weeing just for a few seconds only and on 2 occasions .I had none of the what are termed the usual signs i.e blood in urine or infection in samples .Doctor arranged ultrasound where it was found to be not stones but an immovable mass which went from there .Ask to have it checked if you are concerned and take care .

[Tbrz in reply to cazy-g]

Thank you for this and best wishes with everything.

[Suzym2u Moderator Vasculitis UK in reply to cazy-g]

When you were given your pulses of cyclophosphamide, were you given Mezna at the sane time?

[cazy-g in reply to Suzym2u]

Hi Suzym yes was given mesna and took that as prescribed after each pulse ,suppose well never know if the recent cancer diagnosis resulted in historic medication but its a thought .

[Suzym2u Moderator Vasculitis UK in reply to cazy-g]

What maintenance drug were you given after the cyclophosphamide infusions if you don’t mind me asking

[Suzym2u Moderator Vasculitis UK in reply to cazy-g]

How are things going for you ?

[cazy-g in reply to Suzym2u]

Hi Suzym2u ,

I have been on rituximab since 2012 with initial does at 1 gram x 2 weekly then 500mg 6 monthly until march this year ,I am now on a break from that as it is deemed I could be in remission .I have had 1 relapse in between that time when the rituximab was given 1 gram x 2 weekly plus an increase in pred .I still take 5mg pred daily plus co trixazamole 1 daily .

The tumor has been removed from my bladder in total and not travelled anywhere else. I have opted a wait and see approach re recurrence and will be monitored in Jan 2020 . I am unable to have the normal B.C.G. washes due to it being a live virus ,and currently I have declined removal of bladder

[phil3]

Back in 1999 I was diagnosed with Cerebral Vasculitis and the meds I had for the disease were prednisolone and cyclophosphamide. The neurologist told me of the side effects of these with two being it will cause sterility and may also cause Cancer. Well he was right and 9yrs later I came down with Stage3 Testical Cancer. Which is now all clear but for the rest of my life I’m having cystoscopies to check my bladder and their has been the occasional lymph nodes that needed to be removed.

[phil3]

Hi Suzym2u I had CNS Vasculitis back in 1999 and then 9yrs later in 2008 I came down with Stage3 Testical Cancer then 7yrs later in 2015 it was Bladder Cancer. This was given the all clear but only this year 2019 the Bladder Cancer has returned. The main meds I was on were Prednisolone and Cyclophosphamide. I was told one of the side effects of the Cyclophosphamide is Cancer which it was for me. The Stage3 Testical Cancer was quite aggressive,

[Suzym2u Moderator Vasculitis UK in reply to phil3]

Very interesting and thank you for sharing. Did you have oral cyclophosphamide? If you don’t mind me asking

[phil3 in reply to Suzym2u]

I had both tablets and that was every day for 15yrs but I did have a few intravenous injections as well as the tablets but I was constantly on tablets before I came off them.

[Chipper03]

Hi. I was diagnosed EGPA in 2009 and bowel cancer August 2019. I take prednisolone and azathioprine. I’m currently recovering after surgery.

[Suzym2u Moderator Vasculitis UK]

Thank you for your replies.... my husband John was diagnosed with GPA in 2001. (Cyclophosphamide IV saved his life) . There were not many options of maintenance drugs at that time and Azathioprine did not control Johns very aggressive GPA so he was given oral cyclophosphamide. He was eventually given Mycophenolate Mofetil which he took successfully for 9 years. John has always been ANCA positive even in clinical remission.

But then my husband John was diagnosed with bladder cancer in 2008, successfully treated and the carcinoma removed. In 2016 he was diagnosed with prostate cancer... treated with hormone therapy and radiotherapy and was thought to be in remission but this summer he was diagnosed with secondary cancers to the prostate cancer.

I was interested to hear of other people’s experiences , thank you for taking the time to reply to my question.

I believe there has been preliminary research being done in France on this topic.

[Hidden]

I'm sure there are other "side effects" of varying shades.

It's no surprise, really, to be honest. (I do not mean to offend anybody). Over 50 years old is a danger zone (for cancer/heart disease etc etc) without anything else.

I have been on Myco for the past few years.

Lately, the test flagged up "Macrocytosis".

I'm hoping nothing TOO sinister.

It's useful to have some "common sense".

Immune dysfunction, autoimmunity, cancer, heart disease, ageing, chronic infections..these must be on the same spectrum.

I'm interested in seeing a list of "abnormality" AKA side effects vasculitis patients later developed whilst on immunosuppression.