Need some perspective, please

[SoCalGal]

I cannot think straight, it’s been a rough week and a half. Non-stop headaches. Having trouble with dehydration, and have tried most remedies suggested here and everywhere to manage, proactively, the Tykerb diarrhea deal. Tykerb - am still at 3 pills a day, down from 4 in March and 5 for the past 3 years.

Have had a relentless migraine headache on and off for the past 12 days or so. Depression. Went to the onc today, and am again dehydrated: Potassium is okay. Sodium was 126. (normal range is 135 – 145). For the last few weeks, my blood pressure has jumped from normal & healthy low to 140/90 or worse. The side effects of 3 years on therapy is starting to wear me down. I can’t remember the last time I felt really well.

Have to go back tomorrow for more hydration and to discuss a better plan. I am thinking of taking some time off treatment. My scans are stable, the sternum is not, but I could say that the treatment wasn’t working there anyhow. So what do I give up? Herceptin? Tykerb? Avastin? Zometa? Anything else I should bring up tomorrow with my doctor? They are going to bring up blood pressure pills, I'm guessing. Do I want to add yet another pill/side effect to the mix?

They gave me a bag of toradol today for headache pain. It helped a lot. They sent me home with fioricet, which is making me feel super anxious-creepy-sick-regretful and angry that I took it. The imitrex is not working, but perhaps the headaches are a side effect of the high blood pressure? (Hello 3 years of Avastin, right?).


Thanks for letting me put it all down…I am crying as I type I am just so exhausted and tired of this all.

[BonnieR]

I don't have medical suggestions but I know others will be along to help you with that. I just wanted to say I love you and hear you.
I will state the obvious, that you sound depressed. I mean in a clinical way that might benefit from medication (I know, more medication!). You are overwhelmed, rightfully so.
Don't I recall correctly that you had migranes in the past? What helped then? The fioricet will wear off (can't happen soon enough,huh?) and then you won't have to take it anymore.
I am so sorry this is happening to you but grateful that we have a place to share it. A burden shared is lessened. I always say "keep the faith" although sometimes it is hard. It is what we have.

[Mary Jo]

Hi Flori,

I'm sorry you are having to go through all this. I wish I had some advice or words to help.

Know I care.....Know you are loved.

Sending love and gentle hugs,

Mary Jo

[Gerri]

Flori,

I wish I had some advice for you about your treatment options, but I will leave that to others with a lot more knowledge. I do have a lot of experience with migraines so I thought I would share with you what has worked for me.

Having suffered with migraines since I was 18 I know of the unrelenting pain you are experiencing. A migraine is so much more than a headache, impossible to describe to those who do not get them. You say that Imitrix is not working - do you take pills, use nasal spray or give yourself injections? Only the injections worked for me. There are so many new migraine drugs on the market, maybe a switch in medication will help.

Many years ago I finally found a doctor who also suffered from migraines. She put me on a beta-blocker - 40mg of Corgard 1 x a day. I had tried other beta-blockers, but this one was different and didn't have a ton of side effects. I don't how long it took, but I finally was able to get them under control. Slowly my migraines came less often and then I got to the point where I could actually function when I had one. I haven't had a migraine in a few years and continue to take Corgard. I was considering stopping until I saw a post by Lani a few weeks back about a study indicating that beta-blockers may prevent recurrence of bc - I've decided to keep taking them for now.

I really hope that you can start feeling better soon. I have a feeling that once you get your migraines and depression under control you will be able to make some decisions on what to do with your treatment plan.

Hang in there Flori, I am pulling for you!

[chrisy]

Flori,
that sucks. It's bad enough to be feeling miserable, in such a variety of ways. Of course some, all or the combination of the meds you are taking can be contributing the problems; then the stress of trying to figure out how to unravel it all may also be a factor.

I certainly don't have the medical answers so I'm not going to try to advise you there. I hope your medical team can be helpful there.

For perspective Flori, you have felt defeated before yet you are still here. Look at your daughter's tattoo. Try to get back to being you. You are so loved and deserve to be well.

One step, one breath, at a time my friend.

Chris

[ElaineM]

I don't have any great suggestions. I just want to give you a hug. It sounds like you need a few hugs.
Is there someplace you can go for a few days of rest and relaxation away from your normal environment. I bet that would help !! You might return refreshed and ready to roll up your sleeves and challenge your health problems.

[PinkGirl]

Sori Flori ... this sure sounds like a lot of stuff to be dealing with.
I remember a similar post from you awhile back when everything
was getting to you. This sounds like the same thing ... a whole
lot of "everything" has worn you down.

I would throw myself on some trusted medical person and scream
HELP !!!

I know you'll get through this ... just like you did last time. You
are one tough warrior woman.

[Faith in Him]

Hi Flori,

I hear you. You are going through alot and it isn't easy. I hope your medical team figures out just the right meds for you.

Hang in there.

Tonya

[vlcarr]

Dear Flori,

I've only been at this war since June of last year and I know how sick & tired it's made me at times, so it is no wonder you feel this way since you've been in this war a long time.

What I want you to know, and all the other people on this site who've been in this war a long time, is what you mean to people like me.

Even though you get knocked down, you stand back up and fight the next battle like a true warrior. You give me encouragement, hope and faith that one day this war will be won because of people like you.

I sure don't have the medical answers, but I want you to know how much I admire the long timers like you on this board who keep fighting even when you don't want to.

This war sucks, but each battle you've won is a victory for all of us.

Hugs and love coming your way.

[Becky]

Oh Flori

I am so sorry you are feeling bad. The side effects you are suffering from are probably cumulative from the length of time taking the meds in your treatment plan.

I would review each symptom versus each medication you are taking. Then you and your onc can decide what is best to do.

For example, Avastin causes high blood pressure and headaches while the Tykerb causes the diarrhea (and hence is probably contributing to the dehydration).

I think that eliminating just one drug at a time and see how you feel over a couple weeks might be the way to go. For example, eliminating the Avastin may cause the headaches and blood pressure concerns to subside. If over a month that doesn't happen, then another plan needs to be undertaken. I would be hesitant to take away Herceptin or Tykerb first because you are Her2 and they are anti-Her2 (and the Tykerb may be stabilizing the brain met). Perhaps taking Avastin away may make you well enough to take 4 or 5 Tykerb per day after a month's time or so.

I would recommend trying to do without a drug for a couple of weeks and see how you feel before changing up everything. If your onc wants to change up everything, you can still try an elimination plan and wait a couple of weeks while investigating and pondering your doctor's ideas.

You are an inspiration to all of us and I know you will find yourself in a good place again.

Huge hug to you.

[Sheila]

Flori
So sorry you are going through all of this, but it seems these drugs can take a toll after time...
Since your B/P is on the rise, I am wondering about adding Lisinopril ...I know I am on it to manage my B/P on Avastin, and I believe Chris was on the same back when she was an Avastin Diva...I take one 10/12.5 a day and no headaches, no high B/P, and they added Coreg, twice a day, which is a low dose beta blocker that strengthens the heart..I believe this also helps with migraines....

If they can manage these side effects, the triple play combo seems to be really working for you...but then I know how it is to need a break..
Stay Strong Flori, you are a warrior at this, and many of us look to you for strength....
Sending you a little extra right now and a big hug....you will scale this hurdle....you are our Flori!

[ammebarb]

No advice, Flori. Just a gentle hug and a prayer for you to feel better soon.

Barb A.

[Mary Anne in TX]

Flori Girl, when I have those heads that won't stop hurting, I can't think clearly, my blood pressure rises, and depression takes over. Getting relief for you head seems to be #1 to me.
Flori, you're like a member of the fighting warriors top 10. Please just keep asking for more help til they get it right. I always have you in my mind as the smiling overcomer standing in front of a group who can't stop smiling back at you as they listen. Prayers and love to you Miss Flori, ma

[mrsd]

Flori, I can so relate to how you are feeling...I agree with Pink find someone in your medical team and just scream HELP!! I did and I am so glad that I did. You have been through so much it has to take it's toll. We are so hard on ourselves somehow thinking that we don't have the right or privilge to be sick and tired of being sick and tired. Wish I could say more that would help but I too am sending you BIG HUGS and hoping you find comfort and relief.
Patricia

[Margerie]

Hang in there Flori! Hope you get off this crazy migraine train And then you can rest and be merry again. Give that crazy dog a big hug and I hope you feel better soon.

[jml]

Oh Flori, I'm so sorry.
You're dealing with so much, just trying to feel well enough to keep swinging. I wish the burden were lighter, or that you and your docs find a way to lighten it.
Hopefully a short drug vacay with help normalize things for, allow you some time to re-energize.

Keep us posted.
Hugs to you~

Jessica

[schoolteacher]

Flori,

Thinking of you, and hoping you are feeling better today.

Amelia

[hutchibk]

hey Twinkie - two things:

1. This spring headaches are not unusual because of the insane pollen and grass allergies in ALL parts of the country, including LA... with all the rain you guys have had that is not normal, things are blooming more than the last couple of decades.

2. This time last year I had insatiable thirst/dehydration. We found out I had a small met that had shown up in the infindibulum/sella turcica which was sitting and touching my pituitary gland. (which is right behind the sinuses and optic nerves). It can cause hypopituitarism and/or diabetes insipidus, which is otherwise known as 'water diabetes', and can be caused by intracranial events. http://www.medical-library.org/journ..._insipidus.htm

It can also cause headaches.

We radiated it with slow/low dose radiation and got rid of it.

We found it on an MRI... and the first radiologist missed it in the previous MRI because it was so small, yet I was already having the symptoms. When we went back and looked at that MRI, it was there, but barely noticeable.

My thirst has gotten better, but I need to do another urine collection test to see if it was transient or if I need to treat with vasopressin.

When was your last brain MRI? This isn't a brain met as it is outside of the BBB. It is in the internal structure of the skull. Just food for thought.

[SoCalGal]

Thank you for the feedback, support, and encouragement. I started running a low grade fever late last night. Feel like total and complete crud. Maybe I "just" have a virus. Waiting on a call back from the NP. Don't think I can get to hydration today, unless they will deliver. Not getting out of bed right now. OMGoodness.

[Shobha]

Dear Flori,

Adding gentle hugs and prayers for you to feel better soon!

shobha