Breast cancer and psoriatic arthritis

D4Hope

Breast cancer and psoriatic arthritis

D4Hope

Hi, I found out last Octerber that I have PSA. Had psoriasis for years and the funny thing it disapeared when I had chemo. The psoriasis has destroyed my nails and now I have the srthritis to go with it. I tried managing it with Motrin and steroids, no luch. Sooo I am trying a drug called Avare, it's not as scary as some biologins but I still worry the drug may cause a recurrance or some other cancer. I am in so much pain, I had no choice. There better be a light out of this tunnel.

BLinthedesert

Hello D4Hope, how are you doing?  How is the Avare working?   I have been on methotrexate for 6 months and about to start Enbrel.  I was unable to get my methotrexate dosage escalated to levels high enough to work because of side effects.  I am a runner, and my rheumatologist is committed to get me to 90% functioning eventually -- his approach (not his fault I know) is to keep trying until we get it right.  

I have read that some physicians have been reluctant to prescribe biologics in women with high risk, or history, of breast cancer -- but the only cancer-related risk my doctor spoke about was non-melanoma skin cancer.  Did you and your physician discuss any biologics as a possibility? I am not really looking forward to giving myself weekly injections for the rest of my life, but it beats going in for infusions, so I won't complain. 

Good luck!

MusicLady

Hello DrHope and Blinthedesert!

I've had PsA since 2010.  The psoriasis wasn't extreme, but the arthritis quickly crippled me at early onset.  When diagnosed, I got on Methotrexate and also Enbrel injections.  In just a couple of weeks, I was walking again, and eventually started playing tennis again, which was a miracle.

Then I was diagnosed with BC last Aug. 11.  Had already gotten off Methotrexate a year earlier and had to get off Enbrel for a week before I could get my breast biopsy.  My rheumatologist told me that once I have cancer, I can't evergo back to Enbrel, BUT...there's another biologic that he wants me to try.  I have to get through my BC treatment phase first, though.

I'm concerned that my PsA symptoms might come back if I stay off treatment long enough, but so far, it's not been too bad. I saw a dermatologist who gave me a topical steroidal cream to help the burning and itching in my hands that flares up when I'm not on PsA treatment.

I was just wondering how other PsA patients with BC are doing in trying to manage their PsA while in treatment for BC.  Nice to see I'm not the only one!  I wish you both all the best!

BLinthedesert

Me too Music Lady -- I hardly had any psoriasis, tiniest of spots on my elbows and top of my feet ... little dab of steroid cream and they went away (I did have significant scalp itching which I never knew what it was!).  But man oh man, I went from running my fastest marathon ever to barely being able to walk. It was a real shock, and literally has changed my life in ways I never could have expected.  Enbrel has been a real game-changer for me, I can't believe how much better I felt within a month.  I had did have a flare a couple of weeks ago, and I was so depressed, and fearful, that it is not working.  But, I got through it in just a couple weeks and am a little encouraged - no more panic'ing for a while

Are you going to have to have chemotherapy?  I have heard that many people have experienced a short-term remission of sorts on chemo, I am hoping that is the case for you.  Goodness knows you are going through enough right now.   Getting lots of rest will be critical (as you know) for both disease processes.  I have had some success with Voltran gel for some of the pain. 

I am surprised that your rheumatologist is saying you can't ever use Enbrel again -- the current Enbrel warning (based on some fairly long term studies) says that there is no signficant risk for any cancers other than lymphoma and non-melanoma skin cancer. That said, my radiation oncologist is keeping me on a shorter-term follow-up than she typically would, because she is concerned about the risks. I wonder what your rheumatologist has in mind -- the new oral medication (Otezla)?? that would be cool if that works for you, because the injections are pretty painful. Please let me know how it goes.  

MusicLady

Hi  BLinthedesert,

Thanks for replying and telling me more of your story. It's amazing how fast PsA can cripple you!  I was playing tennis 5 times a week...once a week on a USTA team...when it cut me down.  Still doing well off-treatment so far, and had enjoyed playing tennis strictly recreationally 3 times a week over the summer.

I will know if I'll need chemotherapy when my final post-op path report results are in a few days from now. I sure hope I don't need chemo, but if I do, I'm going to cling to the thought of it being therapeutic for my PsA.  After all, that's how Methotrexate was discovered as therapeutic for RA and PsA patients who were being treated with it for cancer!

I'll let you know when I find out what my rheumy has in mind. I know it's another biologic...and you're right, the Enbrel injections are SO painful!  Let's stay in touch, and thanks again for writing!

Linda

BLinthedesert

I will be thinking positive thoughts for you over the next few day wrt your diagnosis.

I am still running too, though just like you - only as a recreational runner, no more 'training' for me.  Every day that I can exercise is a good day!  I have been learning that backing off at the first sign of trouble reduces the duration of any flares, a painful, but valuable lesson

Best wishes to you ... chin up, deep breaths.

MusicLady

BLinthedesert,  I will not be having chemo as I am Stage One with no lymph node involvement.  So I'm waiting to have my radiation beginning Oct. 6.  Because of other factors, including my PsA, I only have to have radiation for 16 treatments, which is great.  What is worrying me now is that my psoriasis has come back to the area under my breasts.  I haven't had that for 3 years, but after all these weeks off treatment for PsA, things are starting to happen.  I'm going to have to talk to my rad onc and I'm starting to feel very nervous about radiation on places where there is active psoriasis.  I went to my dermatologist and got some Rx topical steroidal creams that I'm hoping will bring it back under control  Hope to talk to my rad onc by tomorrow or at least by Tuesday.

All the best,

Linda

BLinthedesert

oh Linda, I am both happy for you, about no chemotherapy, and worried (with you) about the lack of treatment for the PsA.  I had a fairly hard time skin-wise during radiation, but not enough to warrant stopping treatment (which they will do temporarily if the side effects are too aweful).  I hope the cream works.  You will need to check with your RO about using steroid creams during radiation, mine did not want me to use them. 

One suggestion I would have is to limit all the lotions and potions you use during rads, I tried many of them, and some made my skin worse.  I didn't really have any issues until week 4, and then it was like a bad sunburn with an itchy rash on top. After it got bad I used mepilex dressings (links below) ... I only covered oozing bits, not the whole breast, they are too expensive to use over large areas.  Let me know if you have any questions about this.

The only other thing that happened to me was I had some sort of a delayed rash thing about 4 months after treatment ... a little steroid cream worked fine.

You will really really need to take it easy, rest frequently, I fear the fatigue will hit you harder than many.  For me, not resting enough is my biggest contributor to flares.  

Please keep in touch ... Go easy, it will be over before you know it!

Bonnie

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC347372...

http://www.amazon.com/Mepilex-Wound-Dressing-Safet...

BLinthedesert

Hi Linda, and all,

Just checking in. I hope you are all cancer, and pain, free.

After 6 months of weekly injections of Enbrel, it quit working about 2 months ago (why do they say you fail treatment, when I think the treatment is what seems to fail you??) -- anyway, started Humira yesterday. Fingers crossed that this one takes. I am glad that the Humira injections are every two weeks instead of every week, silver lining?

Cancer-wise, so far so good.

MusicLady

BLinthedesert,

I know it's been forever since I've posted, but I wanted to try checking in anyway. I never was allowed by my rheumy to go back to Enbrel because of the cancer risk, so once I was out of treatment, I was started on a relatively new oral treatment called Otezla. (I did have one crippling episode during treatment that went to my knees and sent me to the ER.) Otezla's not working as well as Enbrel, but it is probably 85-90% as effective.

How has the Humira been working for you this past year?

Linda

BLinthedesert

Hello Linda,

I am so glad that Otezla is working a little anyway. I am so hoping that physicians can get comfortable using the TNFa inhibitors in patients who are currently in "remission" or past history of cancer -- I understand their concerns, but I just don't think the data bears out such worries. Do you take prednisone during flares that occur while on treatment? I have a big ole bottle that my rheumatologist gave me "just in case" -- but he was a little vague about when, how long, how much did "just in case mean" (I do have some steroid drops that I use infrequently when my eyes get super painful, but I usually only use them for 1 - 2 days until the pain goes away). I am so sorry you ended up in the ER, you poor thing.

Oh, I miss Humira, it worked sooo well for me. Unfortunately, I ended up with a fairly significant allergic reaction (hives/rash) -- so after 6 weeks they took me off of it (I was sad). I then went on Simponi, which was nice because it was a 28 day treatment, but bad because it only really worked for 18-20 days. I was then given the option to try Cimzia, or infusion (Simponi or Remicade). I opted for Cimzia. Cimzia has a loading dose of 400 mg (2 shots of 200 mg each) every two weeks for 6 weeks then either 200 mg every two weeks or 400 mg every month. I just finished my loading doses a couple of weeks ago and am supposed to try the 400 mg/28 days. No side effects - except ouch, the injection hurts -- and no autoinjector either, so it is 2 syringe-fulls of really thick painful stuff. I will tell you a secret - I really can't handle the syringes, I am such a baby. I have been going to my neighbor (who is a physician) and having her do the injections -- and even with her doing them it hurts so much. I can't imagine doing them in my stomach, and my thighs couldn't tolerate the lump of stuff for as long as it seems to hang around (I have her do them in the back of my arms). I really fear that I will be moving to infusions soon. I am trying to stay upbeat - I can still exercise (I run), most of the time. For me, the pain sucks bad, but the fatigue and general malaise is what is so difficult to handle and is emotionally draining.

keep in touch! and, hope your breast cancer surveillance is going well

Bonnie

MusicLady

Hi Bonnie,

Thanks so much for your prompt and newsy reply. It sure helps to see what else is out there and what others are trying and dealing with.

I had thought Enbrel injections were almost unbearably painful, but at least it was in an auto injector and putting ice on the area beforehand helped somewhat. I'm really glad you have someone to help you with those nasty Cimzia injections!

Breast cancer surveillance is going well...had my one-year imaging recently and all looks good...I'll be going back in 6 months for a new kind of sonogram due to dense breast tissue.

Take care!

Linda