Chemo & autoimmune disease

Thanks for your reply, 3daywalker.  As far as the Lupus goes, I have been taking Plaquinil for the last 11 months.  After 6 months it worked miracles, but I had to be patient and wait for it to work.  I no longer have a long list of horrible aches and pains and I also don't have that complete lack of energy to even get out of a chair, let alone get anything done.  Until this bc diagnosis, I was doing quite well for about 6 months and feeling practically normal.

As for your bc, did you have chemo and if so was it the regimen that has been recommended for me, being herceptin, taxotere and carboplatin?  If so, did you have any unusual or life threatening side effects from the treatment, as I had every side effect both rare and common from my last chemo 20 years ago from Non-Hodgkins Lymphoma and it took forever to start having any quality of life afterward.  Thanks for your help. 

It is actually an antimalarial drug that is also used for auto immune patients for which other treatments don't work.  It works great for me and I hope it does for you, but remember to be patient since it takes about 6 months to work.

Thanks for the info on the chemo.  Sounds like the reactions I had expected.  Problem I had before was fluid building up around my heart that almost killed me and thrombosis (blood clots).  

 How long after to finished treatment before you started to feel human?  My last bout took me years before I felt decent again and then I was always getting sick from then on.

 So glad to find someone similar. 

Thanks for the info about how long it took you to feel better.  I had been an avid walker until this hit, and intend to resume that practice asap.  I just had a flu and pneumonia shot as instructed by my oncologist and had a horrible reaction with more pain than I can remember from chemo and 103 fever yesterday.  I think it may be a sign that chemo just isn't in the cards.  I may just take my chances that it won't come back.  They said 70% chance it won't return without chemo, and it was only 50% after chemo with the lymphoma.  That's where I'm at now 

I went to Urgent Care today and have a staff infection from something to do with the way the shots were administered or some other magical event.  They put me on antibiotics (again), drew a circle around the infected area (again) and if the infection spreads, back to the hospital I'll go for I.V. antibiotics and CDC intervention.  Hopefully, the antibiotics will do the trick.

About getting sick more often, absolutely yes.  My husband and I stopped going to movie theaters 10 years ago because I would catch a cold or flu every time.  I haven't been sick at all since the Plaquenil started working (except for this pesky cancer and infection problem).  I truly hope the Plaquenil works for you as well as it has for me.  My aches and pains are virtually gone as well.

I think I've had my autoimmune problem since I had cancer the first time 21 years ago and just didn't understand why I got sick all the time and never had any energy, then came the aches and pains and migraines, etc.  So If you have other questions, not that all cases are the same, I'm happy to answer from my personal experience. 

Hi 3daywalker: Staff infection responded beautifully to the antibiotics.  My oncologist said I also had a full blown flu breakout from the flu vaccine.  

What woman doesn't worry about weight gain?  I have had not change in appetite that I can attribute to the Planquenil and to weight gain.  As a matter of fact, I've had no side effects at all. You are right, we are the Dr.'s haha.  We're are that 1 in 100 that gets all the weird reactions.  Went to the Oncologist yesterday and am now going to try 1 treatment of Herceptin alone without the adjuvent chemo.  There are NO studies as to whether the Herceptin administered alone in early stage patients is as effective or not as when given with the awful chemo drugs they administer along with it.  I seriously think there should be a clinical study to ascertain whether the extra chemo is even necessary in early stage HER2+ patients.  My oncologist said the chemo alone is ineffective without the Herceptin.  Pretty interesting, eh?  I'm waiting a month before actually making a final decision, but plan to go ahead with one Herceptin treatment and see if I have a bad reaction.  If not, I will continue with the Herceptin alone for one year.

Let me know if you have any other new symptoms with your auto immune disease and how you're progressing.  Glad to have you to talk to as well! 

Hi, 3daywalker:

Thanks for the info on Herceptin side effects.  I do plan to do the Herceptin starting in February. My oncologist just acknowledged that the auto immune does often cause patients to present with odd reactions.  My gut tells me that the Herceptin alone will do the trick for me and I don't believe I can handle the chemo side effects and recovery time having been through it before with life threatening side effects and a good 1-1/2 years to get back to feeling normal.  I know I'm gambling with my lifespan, but prefer to have good quality of life with whatever time I am given.  My next oncologist appt is on Feb 14 and I would imagine the Herceptin treatment will begin within days thereafter.

Just had my first expansion.  Only have 120 cc's so far and am hurting quite a bit.  The nerve endings are giving me trouble.

 Also, my oncologist wants to try to give me the treatments without installing a port.  Good luck with that as my veins are terrible, but have to give her props for not wanting to give me another scar and more pain to deal with if possible.

 That's all for now.  Thanks for keeping in touch! 

I have a bunch of scars from my Lymphoma as well as the lovely mastectomy scars and then there's those 7 bullet hole scars from where my drains were!  I love your sense of humor about the nipples.  I've been saying from the start that I'm going to have daisy tattoos and all my girlfriends love the idea.  My husband doesn't like the idea, but may be warming up to it now with everything that has gone wrong.  We have to laugh.  

Where and when did they find more lumps?  Were they malignant?

I was a D before and am shooting for a nice B or C.  They were never pretty, so anything will be an improvement and perky, I love the idea of perky.  Do the implants feel heavy?

 How long have you been taking the Plaquenil?  I hope it works as well for you as it does for me. The difference is really huge.  Most days, I feel fine with hardly any aches and pains, don't get sick as often and have more energy.  

Hope to stay in touch as this I progress with the expansions and Herceptin treatments.  I enjoy talking to you.

Take care,

Twicebit 

3daywalker:

Thanks for the info on the implants.  Sounds like I'll get use to them after awhile.  Had to cancel my expansion appointment today due to a chest cold.  I figured adding more tightness to the chest would not be in my best interest - go figure.

I had to take prednisone in massive doses when I was being treated for Lymphoma and they made me crazy, so I refuse to take them anymore and the NSAIDS they also prescribe for auto-immune always mess up my stomach, so thank goodness the plaquenil helps.  

How fast did they expand you and how much at a time?  I'm going real slow.

I'm sure your Rheumy will tell you this or already has, but there is a small possibility of problems with eyesight, so you'll probably need an eye exam every 6 months.  It's important that they catch it early if anything starts to go wrong, but it is rare.

Good luck,

twicebit