I'm at such a loss...

steelrose

I've hesitated to post about this, mainly because I feel like I should be grateful that my cancer is stable after six and a half years at Stage IV, and also because I don't want to scare anybody. After progression last May, I went on chemo (Doxil) until October '15. Scans were good, and I switched to Ibrance/Aromasin in Nov. with good results. In April '16 I developed neuropathy and started having trouble walking. This got worse and I went to the emergency room on May 27, fearing that the cancer was compressing my spinal cord again. Well, after countless scans and tests including a brain MRI, lumbar puncture, spinal MRI... you all know the drill... I was clear for cancer. So the neurologist has diagnosed me with CIDP, some weird disorder that I don't even understand. But he's not 100% sure this is the problem. Still, I've had four IVIG treatments for this with no improvement so far. In fact I think I'm worse! I can barely walk even with a walker, I have to lay down after the simplest tasks, and I haven't driven or hardly left the house since early June. I'm flat out miserable. This is not quality of life!!! All the while I'm convinced that the Ibrance/Aromasin is the culprit, despite my oncologist's denial. She briefly took me off both drugs before I was diagnosed with CIDP, with no improvement so I'm back on both. The Aromasin seems to cripple me even more with severe joint pain. I'm thinking about quitting both drugs and maybe going on a milder anti-hormonal to give my body a break. Any ideas what might be tolerable? What would you do?

Thanks for reading this, and sorry for my whining. I just can't believe that cancer isn't the problem here...

Rose.

ElaineTherese

Hi!

I have a colleague at work who was diagnosed with CIDP. It's an autoimmune disorder. He was diagnosed with it after suddenly falling down while walking a few times. At first, his doctors thought he had MS, but because it's just his lower extremities (neuropathy in calves/ankles/feet), they diagnosed him with CIDP. He's also done some standard CIDP treatments, like IVIG. I'm not sure if that worked for him, but I do know that he came back to work full-time after taking short-term disability for a semester to get his CIDP under control. He's been walking around the department without assistance for the last six months.

I'm on vacation right now, but when I get back to work, I can ask him about what treatments have/have not worked for him. Sorry this is happening to you. Not sure what you have; just wanted you to know that other people are diagnosed and treated for CIDP, too.

steelrose

Thank you, ElaineTherese. Wonderful news about your colleague! I guess what concerns me is that the neurologist isn't convinced that CIDP is the problem. But your post gives me hope that if it is, I may get back in my feet again.

Enjoy your vacation!

Mab60

rose, hi. I need to update my treatment plan as it does not accurately reflect my course of treatment. I was initially put on the ai femara. I lasted 6 weeks. I could not walk just like you describe. I stayed off of it for about a month and got to the point that I could walk but only with a cane with significant pain. I was than switched to aromasin. Lasted 8 weeks and the same thing happened. I needed assistance just getting out of bed. Aromasin stopped and switched to falsodex. Started that mid January. Stopped aromasin end of December. It took about 4 to 5 months to get the ai out of my system. I feel no side effects from the falsodex. Falsodex is not typically a first line treatment so my oncologist had to get it approved. I am doing very well on it. I am overweight so I don't know if that was a factor with both previous ai treatments. I would ask the oncologist about falsodex.

Mary anne

steelrose

Mary anne,

Unfortunately I flunked Faslodex! Did you have neuropathy on the other drugs, or joint pain? Funny how these drugs effect us all differently. I lasted five years on Arimidex, so go figure. It really is a crap shoot.

I wish you continued success on Faslodex!

Key2

Not sure if this is important but I have notice on my short IBRANCE/LETROZOLE week which I finished my first round of both went off IBRANCE for a week staying on LETROZOLE only. I notice my joints hurting taking LETROZOLE by itself (which is a noted side effect) Started my 2nd round of both drugs again a week ago and my symptoms of joints hurting have gone away about 75% again, so I feel that the IBANCE definitely effects something with the joints and the pain going away when I'm on both drugs together..Not sure why but for me it does. I will let me ong. Know when I see her again end of August

zarovka

((steelrose))

It is very critical to whine and moan until you get this solved.

Personally, I would take a break. I would decide with your oncologist in advance how long a break would definitively rule out the drugs as the culprit. It could be CIPV or something else. And it could be a complex interaction. But, QOL aside, that level of of pain and disfunction will itself impeded your ability to fight the cancer. It has to be dealt with.

I would be posting on CIPV forums to learn as much as I can about that disease.

Don't give up ... and thanks for posting. Cancer is complicated enough without the layer of another disease, but it is something we all need to be aware of.

>Z<

Bestbird

Steelrose, I am terribly sorry to hear what you have been enduring, and it is good that you have decided to post because you can (and already have) received many excellent perspectives.

Another thing you might consider is going back on Tamoxifen if it's been several years since you were on it (if ever).

Thereafter, you and your doctor might consider Estradiol (indeed a therapy for ER+ mbc as odd as it sounds! Our Longtermsurvivor was on it for quite some time). There is also Megace, or Halotestin. All of these are FDA-approved.

I'm also wondering whether you have been checked for MS, as sometimes MS can cause neuropathy and issues similar to those you describe. Whereas I certainly hope this will not be your diagnosis, it would probably be worth checking out.

I hope you find the cause and begin to feel much better very soon!

stagefree

dear Rose,

The body talks and if you listen closely (some call it intuition) you ger to decide on what's best for you. Last summer I was so miserable on X full dose, that I quit it totally for two full months on my own decision. TMs were stable at first, got lower! after that and only started to rocket back up at the end of the third month when I put myself back on the lower dose of X again.. Tms were already rising slowly before I quit and continued rising after started back on treatment (MO not informed), but I felt good those 2 months. Mom supported my decision and put me on a strict diet. DH supported me with my decision and helped me as much as he possibly could.

The only drawback was I needed full dose of narcotic painkillers as the cancer pain topped without treatment.

Rational approach and strict treatment is tiring for sure. It's your body, your decision.. Yet, do remember qol does not get better off drugs.. Tested and seen that!

Hugs& love

Ebru

steelrose

Sweet ladies, thank you all so much for your replies.

Key, it's hard to tell what's causing what sometimes, isn't it? It's good to pay close attention to your body and take notes. The Aromasin may actually be tougher than the Ibrance, I think... of course tomorrow I'll be blaming everything on Ibrance:)

Z, thank you. I'm doing my homework on CIDP, and hoping the treatments take hold. I'd like to take a break from treatment but honestly I'm too scared right now. Maybe down the road (and I'm hoping for a LONG road!). But I always want that option and we absolutely have options. Our bodies, our decisions, as Stagefree says! I hope you're doing well on Ibrance.

Bestbird, as always your input is smart and well researched. Thank you!! I actually thought about proposing Tamoxifen to my MO if and when I decide to take a break. It was my first treatment after diagnosis in 2010. I've heard of Megace but not the other drugs... will have to check those out too. As for MS, the neurologist has done extensive bloodwork and hasn't mentioned it, but it has crossed my mind. The symptoms are indeed similar. Hope you're doing well, and I always appreciate you.

Ebru, just nice to hear from you with all you've been going through. Thank you for your wise words about qol. I hope things are a bit more settled for you now. Sending love, as always.

And I've received so many nice messages from non- stage iv ladies! I see that many have experienced autoimmune disorders after and during cancer treatment. This is a real problem, and one that I feel the oncologist's don't want to deal with. At least mine doesn't want to address that there may be a connection. It's important for us to share stories. Thank you all.

Rose.

Heidihill

I'm sorry to hear of the problems you're having, ((((Rose)))).

What would I do? I have faced quality of life issues and have gone on short drug holidays (2-4 weeks) mostly in the summer. But it doesn't seem to have worked for you (maybe it was too short?). In your shoes, I would switch to Tamoxifen. In the past 3 years I've switched from Femara to Arimidex to Tamoxifen to Arimidex and back to Tamoxifen again, for eye issues and major nerve inflammation (with right side numbness) due to injury. With the last one my onc switched me to Tamoxifen and added cortisone. I also did acupuncture and massage concurrently. There is some evidence that the lack of estrogen promotes inflammation. So a selective estrogen receptor modulator, which can act as an estrogen agonist in some tissues, maybe including brain and nerve, might be helpful. My problems resolved after a few months and has not recurred. That was more than a year ago. Maybe this is something for you as well.

JeninMichigan

Hi Rose

I am so sorry to read about the misery you are going through. Don't even feel like you are whining!! The side effects of the drugs we take often do us more harm than the cancer itself. You may well be having side effects specific to you from the drug combination that are not on the "common side effects" list associated with the drugs. Arimidex gave me high blood pressure and extreme insomnia to the point I was barely functioning. Aromisin wasn't any better for me. I did much better on Tamoxifen. Right now I chose to take no anti hormonals but I am less than 5 percent ER positive and have been NED for a long time. My doctor prefers I take something but I made the choice this time. It well could be your body's reaction to the combination. I would seriously give it consideration to take a lower dose or look at Tamoxifen. I hope you get relief and a plan soon. My heart goes out to you having such struggles.

Much Luv

Jen

steelrose

Heidi and Jen, thank you so much for your input here. Both of you have done so well for so long, and I do believe that your healthy lifestyles combined with smart, conscious choices (listening to your bodies and speaking up!) have helped. I see my onc. on Fri. and will ask about Tamoxifen. Thank you both again, and may you continue to thrive!

Love to you..,

Rose.

Fitztwins

The long term side effects of these drugs are real and it is hard to get the docs to address them. Shout from the top of your chair!!

I hope you find relief soon. Plenty of good advice given here.

I just recently had an event from long term side effect of Zometa...I had a feeling, but next time I will be LOUDER with my concerns.

steelrose

Thanks, Fitz. Hope your Zometa issues have resolved. That's what we get for sticking around for so long. Despite everything, I'll take it! Cheers to you...

Rose

208sandy

Dear Rose - I flunked all the AIs - unbelievable pain, neuropathy (which I also have from my Taxotere days), insomnia, high bp, blood sugar off the charts - everything under control now after 8 years - I've been on Faslodex for 19 months now - still have se's but nothing like before and so far so good, I am stable finally! I know you've been on Faslodex before but can you try it again? Sending you hugs, S.

Mab60

hi again rose (love that name, it was my mothers). I am thinking along the lines of sandy's post. My experience on 2 ai's was horrific. Went to an emergency room just like you. Do you think you can ask your oncologist about falsodex again? It seems I have read where bestbird has said that it is possible at times to go back to a previously failed treatment. I have been tolerating falsodex well. Sending you best wishes. Let us know.

Mary Anne

steelrose

Sandy, I'm so happy that Faslodex is holding you stable! May it continue for a long time. I'm thinking that maybe Faslodex plus Ibrance may be worth a shot for me in the future. Ibrance may reboot things... who knows? But recycling these drugs after a period of time seems logical to me. Sending you love and best wishes, Sandy.

Mary Anne, thank you. Another Faslodex success, yay!! It's been such an effective drug for so many, and I hope it continues to be for you too. And there's always the option of adding Ibrance if Faslodex starts to fail. It's so important to stay informed of these things, and I've learned more from these ladies over the years than anyone. Wishing you all the best!

Rose.

Mab60

rose. Please keep us posted what you and doc decide. Fingers crossed.

Mary anne

dawny

Rose, how are you doing now? xx

Mab60

rose, I was just wondering the same. How have you been doing

Mary Anne

jobur

Rose, Me too! How are you?

steelrose

dawny, Mary Anne, and jobur...

It's so nice of all of you to remember me! I wish I had a happier update, but things seem to be getting a bit worse. I had another treatment for the CIDP (5 hour IVIG infusion!), and it doesn't seem to have worked all that well. I'm getting around with a walker, but I've fallen a few times when I get daring with my cane. It's so depressing. The neuropathy seems to be creeping up my body, and it's effecting all sorts of interesting things (I'll avoid TMI here).

I remain on Ibrance/Aromasin because I do believe it's keeping the cancer in check at least. But on another bizarre note, my onc. is holding firm on "the cancer meds didn't cause this!" while recommending a second opinion from my current neurologist (whom she recommended)... at the Mayo clinic no less. AND she asks me if I want to go on chemo (Gemzar) to possibly put me into complete stage iv remission and prove that the Ibrance/Aromasin isn't the culprit.

Am I the only one who thinks this is all crazy, or maybe it's just me?? I'm more confused than ever!

So very grateful for all of you being here...

Rose.

RonnieKay

Rose...ugh..off the blog for too long & now reading what you've been going through. I'm so sad...being stable, and going through this debilitating time is so unjust! I hope the second opinion can help confirm what's causing this. It seems to have come on so quickly, with such a vengeance, that makes it look to my untrained eyes (yet WE know our bodies), that "something specific" brought it on. I know others with autoimmune disease, and it's been a progression of symptoms-over years. I'm so sorry you're dealing with this-but you're dealing with it-so keep advocating (hope you have others to help you with that!)! Like Ebru says...shout it from the top of your chair!!!! Hugs.

Mab60

rose. Dang I hate that you are going through this. I too am hoping that second opinion might shed some light.

When will the second opinion happen? Thinking about you. Please let us know outcome of that second opinion. Hang in there.

Hugs, Mary Anne

steelrose

Mary Anne,

Thank you. Not sure about the 2nd opinion. After some research I do believe my current neurologist is correct about the CIDP. Just not sure what triggered it... maybe just bad luck?? But the Mayo clinic involves travel to Arizona, expense, etc. I'm considering it, just not there yet. I have one more IVIG treatment thst'sbeen approved by insurance. Have got to turn this around!

Mab60

rose. Got it. Hoping that second treatment turns something around for you. You are in my thoughts and prayers.

Mary Anne

jobur

Rose, I'm so sorry you are going through this. I had a minor problem with neuropath in my left leg when I was dx'd with cancer. I was told it was not caused by spinal mets, but after seeing 3 different neurologists, none were able to find anything and I left their offices leaning on my cane. Someone here on the forum said neurology is still in it's infancy, and I think there were right on the money.

A 5 hour infusion?!  That sounds awful, especially if it doesn't seem to be helping. And yes, I think you mo's attitude that Aromasin/Ibrance could not possibly be causing this but you could switch to Gemzar to prove it is crazy. Maybe it's time for a 2nd opinion from another oncologist as well as a 2nd from another neurologist. How brief was your tx break? I recall you were on the Faslodex thread for a very short time, maybe not long enough for it to work. Or maybe give it another shot along with Ibrance. If I suspected my current tx was causing this debility, I would definitely want to at least try a different treatment for a minimum of 3-4 months to see if things improve.

Although I never got a dx for my problem, it gradually improved. I exercised and worked at it until I could walk again, and my cane is gathering dust in the back of the closet. Whatever you decide to try, I will be hoping to hear some good news soon. In the meantime, sending hugs and hope.

Jo

steelrose

((Jo)), thank you. I'm so glad that your situation resolved itself!

Don't exactly understand what my MO is thinking, but I do know many of these doctors refuse to acknowledge the potentially crippling side effects of these drugs. I don't know if that's the case with me, but something's terribly wrong. She took me off both drugs for maybe 5 weeks with no improvement. I'm holding on to Ibrance/Aromasin at least until I finish my 10th cycle. I've been reduced to 100mg, which doesn't seem to make much of a difference. Meanwhile, I continue with the treatment for CIDP next week. And the Mayo clinic called, so I may be heading off for second opinions if nothing gets better.

I hope you're doing well!

Rose.

Mab60

hey rose, i can only speak from my experience with the first two ai's I was on. I simply could not handle. I was in bed most of the time and not managing well with a cane. I would say it took at least 4 months to clear from my system. Have been tolerating falsodex well. I think all of us are so different with respect to how our bodies tolerate the treatments. Sending hugs and hope your way every day!

Mary Anne

steelrose

Mary Anne,

That's interesting. Four months was about my guess to clear from our systems. It was crippling joint pain on the ai's?

I took Arimidex for almost five years and was NED with manageable side effects. It was a very lucky drug for me! I progressed quickly on Faslodex. You're right, we're all so different. I just wish there were answers! Grrr...