41 Years with Wegeners - Not a Relapse after all - Squamous Cell Carcinoma

[Kimberjoy]

Hi Everyone:

Well I have not posted since September or so. For those that remember, I have had Wegeners for 41 years and have had a kidney transplant for 25, I had another one for 10 years before that. I was treated for a relapse this summer (two doses of Rituxan and high dose steroids). My relapse presented as bleedy nose issues, elevated SED rate and PR3 and constant sinus and ear infections, similar to what happened when I first got sick. Those symptoms had been going on for about 3 years. An ENT at Hopkins confirmed that I had "active disease" in my nose, so I was started on Rituxan and high dose steroids in August.

I didn't post much here because I just never got better. I know everyone said it took a couple of months but I just was not seeing good results. I began to feel like I was a "non-responder". I got a bad sinus infection in November and was treated with Levaquin for 25 days! During that time I developed horrible pain in the right side of my face at night. It would migrate around, like a brain freeze up my right nasal passage and across my forehead and down into my jaw. The holidays were tough. An MRI at Hopkins showed inflammation consistent with Wegeners/GPA so my ENT/Rheum put me on a short course of high dose steroids. Nothing helped the pain.

Finally last Friday, I wound up in the ER with the pain, another MRI and a nasal biopsy that showed a Squamous Cell Carcinoma tumor in my septum. Feel a bit like I am living a dream, wishing one of the 4-5 ENTs that I had seen in the last 3 years would have biopsied it. I am also trying not to look back too much but rather look forward positively. Quite frankly I am soooo relieved to know what is wrong with me. The way I look at it, I have taken immunosuppressants for the past 41 years with warning labels that say "may cause cancer". In a way, I have dodged this bullet for 41 years.

My message to everyone, is if you have been on immunosuppression for a long time and end up with weird sinus symptoms, insist on a biopsy.

I know I will be ok. Like all of us, I am a fighter. The plan is surgery in the next week or so and then radiation. Hoping for a really cool looking nose if they have to do have to do reconstruction. :) Thanks for thinking of me. I will keep you posted.

Much love,

Kim

[gilders]

Hi Kim,
You have the same attitude as me. I would rather know that I have something serious so that you know what you're up against and can begin the fight, rather than not knowing, even though you hope it's nothing serious.

I've also had Wegeners for a long time, but worried that as my kidneys are involved (had my first transplant last March) I would not live to an old age. You give me great hope knowing that you've been a fighter and survivor for 41 years, compared to my 25 years!

I hope treatment for your new battle is swift, yet as gentle as possible.

[annekat]

Thanks, Kim. It's so true than everyone's story is a little different, or as in your case, a lot different. You've done us a great service by illustrating the possibility of cancer, which we may conveniently forget about a good part of the time. I'm sorry it had to be at your own expense. I knew my septum had collapsed but it never occurred to me that cancer could happen in that area. You have such a great attitude that I'm sure you will be OK. I just hope the surgery will go smoothly and recovery will be quick. And that you end up with a cool nose!
Anne


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[Kimberjoy]

Hi Anne and Gilders,
Thank you for the notes! From what I have read both the long time immunosuppression and/or the chronic inflammation can make a Wegeners nose a nice spot for squamous cell carcinoma. Fortunately there are a ton of advancements and they can now do the surgery intranasally. I will keep you posted but for now thanks for the good thoughts and healing vibes!!
Lots of love,
Kim

[Masha]

Kim,
I am so sorry to hear everything you have gone through. You must have been just miserable. You did all of us a great service by sharing your journey. If there is any consolation, know that someday, somewhere, your words regarding a necessary biopsy will reverberate in our ears. How easy it was for the doctors to assume it was Wegeners. I once had a law professor who said when you assume, you are making an ASS out of U and ME.
You have a beautiful attitude. My prayers are with you.
Masha

[chrisTIn@]

Hello Kimberly. I haven't been on the forum much last couple of months, and I just read your story.
Like others said, it 's good that you posted a warning for other patients. So thanks again.
Did you have the surgery? I hope all went well!

[woz]

Hi Kimberly,

Having a suppressed immune system can cause a lot of other problems, I have had one of those removed as well as a melanoma and a dozen plus basal cell carcinomas, I see a skin specialist every 4 months, and usually have something cut out.

Good luck with your treatment, and stay safe.

Regards Woz...

[Kimberjoy]

Hi Everyone!
You are all amazing!! I am doing well. Because the tumor was so big (4.5 x 2.5cm), surgery was risky and carried a high morbidity rate. It would have been twelve hours and I would have most likely lost all of the bone of my nose although they said they could save the skin. I opted for Induction Chemotherapy which was recommended by both Georgetown and MD Anderson in Houston and includes chemo followed by radiation. In February I completed two rounds of heavy duty chemo at Georgetown and the MRI taken just before my 3rd round showed “very dramatic disease regression” - the tumor was in a near or near complete remission! I had one more round and them came down to Texas for pencil beam proton radiation therapy on April 1 with treatment beginning April 20. The radiation will ensure that no microscopic disease remains. Even though we Weggies are tough cookies, I am not going through this again. Today I completed #13 of 33 treatments! Yeah! My nose is a little pink but it is intact. No surgery will be needed.
It was really tough being down hear alone for a month on my own. I had to be hear because of the Texas quarantine and the pre radiation treatments I needed. In order to minimize travel, I asked my family to wait until I would need them physically and the side effects began to kick in.

My mom came Friday and my husband will come Monday and remain with me for the rest of the stay. I felt alone, super isolated but I got though it!!

Here is something that I hope will make you laugh! A picture of me getting chemo on St Paddy’s Day during a pandemic. Oh dear! What a time we are living though! Thanks for the notes and apologies for my delayed response. Stay healthy and stay safe!!

Much love,

Kim

https://uploads.tapatalk-cdn.com/20200507/347bdc9a98cba3ae0497560da850af0d.jpg
https://uploads.tapatalk-cdn.com/20200507/2bd9fedf79bcee297e9839a0f6041683.jpg


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[chrisTIn@]

Wow! You and your nose look wonderfull. I am so happy for you!
I can understand that you felt isolated. Very nice that you finally saw your mum, and that your husband is on the way.
Wishing you a very good recovery.
Thanks for your message.

Stay strong! :smile1::smile1:

[richard052018]

I must say you are quite the inspiration. I hope your family realizes and appreciates how tough you are: tougher than a $2.00 steak (I hear this metaphor is popular in Texas). Many blessings to you, please be safe, and hopefully sooner rather than later, you'll be sleeping in your own bed.

[annekat]

Congrats, Kim, on getting the tumor zapped with chemo, and thanks for the update! Also thanks for sharing pics of yourself. You are cute, especially in the green wig! Good to know your loved ones are gathering near you. Best wishes for complete recovery with your nose intact.

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