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/journals4a/diabetes_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

[Rich66]

Obviously anything has to be coordinated with your onc but..

If you have migraine issues, feverfew herbal is supposed to help with that. Feverfew contains parthenolide which has anticancer/cancer stem cell properties as well as calming qualities..supposedly enhancing melatonin production. Available at www.GNC.com
If common allergies might be an issue, Quercetin is supposed to help with that...along with anti-cancer/metabolism regulating qualities. I believe it is thought to help with diahrrea. Thought to increase absorption of certain nutrients and meds. Available as supplement but found naturally in onions.

There is some suggestion that Avastin, like many therapies, might be better tolerated if given lower dose/more frequently.

[Bill]

Hi Flori! I'm sorry to hear how you've hit this rough patch. Are you trying to drink more and trying some of the fluid recipes and anti-diarrhea remedies listed here in the past? Please know that your in my thoughts and prayers. Love,,,,,,Bill

[Patb]

Please know I am thinking of you and wishing you the
best. The others have given you good advice and food
for thought. Just know we are here for you in our hearts.
patb

[BonnieR]

Flori, how goes it?

[caya]

Hi Flori,

Hope you are doing better. I am thinking of you dear girl.

all the best
caya

Sei Gesund.

[Lani]

Flori--I just got back from the AACR annual meeting. Apparently Avastin seems only to
slow down progression of disease, but not change overall survival in any way.

Perhaps your oncologist knows of other means of achieving antiangiogenesis without the same side effects ie, metronomic chemotherapy, NSAIDs etc

One word of caution (and unfortunately I could not split myself into six clones and attend all sessions that interested me): there are those who have observed a rebound of tumors after discontinuing avastin --originally described in mice, don't know how often in humans--felt to happen because although avastin kills the blood vessel lining cells of the blood vessels feeding the tumor, it does not destroy the framework of the scaffolding for the blood vessels, so once it is stopped the scaffolding is already there which means it take much less time, effort and energy to reconstitute a new vascular system to feed the tumor.(like leaving the foundation and bearing walls rather than destroying an entire house, it is much quicker,easier to rebuild the house)

Someone from Genentech talked about the phenomenon and whether it was
found in humans and what could be done about it. I knew I would be sorry if I didn't attend--that someone would expect me to be able to help with that knowledge, but knew most talks were taped and could be bought through a company for listening afterwards ($399 for the entire meeting, but I met someone perhaps willing to split costs). If I get the tape I will listen to the talk and update you.

With that in mind, it might theoretically be best to add something else antiangiogenic when stopping avastin, although I generally agree with Becky that it is generally a good principle to stop one thing at a time to see what is causing a problem.

I also met someone from the NIH who is interested in having her2+ patients
for a trial he is doing with a radionucleide (radioactive-labelled compound) which is targetted with herceptin which seeks out and identifies (and perhaps someday treats) residual her2+ residual disease.

There were loads of new drugs being found useful in her2+ disease, and very hopeful reports with panher blockers.

Hopefully the cavalry (of new drugs) is coming over the hill just in time to be available to help if you find your present combo is not all it can be.

Best of luck!

[Rich66]

Tying in with what Lani saw at AACR, more on Angiogenesis, Avastin and other approaches:

http://her2support.org/vbulletin/showthread.php?p=221218#post221218

[ElaineM]

So sorry you are still under the weather. If you can't make it to the doc's office for hydration keep drinking water, tea, juice, soup and eat alot of fruit-------That will help with the hydration. I know salt can increase blood pressure, but it might help to put a little pinch of salt in a glass of warm water and drink it slowly for hydration. Oranges and bananas have potassium. Instant hydration and instant Gadorade !!
We are cheering for you !! Take good care of yourself.

[Bill]

Flori, Flori, Morning Glory, you better listen to Sister Elaine. Don't make me come out there.

[Lani]

hot off the press:
Eur J Clin Pharmacol. 2010 Apr 17. [Epub ahead of print]
Incidence and risk of significantly raised blood pressure in cancer patients treated with bevacizumab: an updated meta-analysis.
An MM, Zou Z, Shen H, Liu P, Chen ML, Cao YB, Jiang YY.

R&D Center of New Drug, School of Pharmacy, Second Military Medical University, 325 Guo He Road, Shanghai, 200433, People's Republic of China.
Abstract
PURPOSE: Bevacizumab is a humanized monoclonal antibody targeting vascular endothelial growth factor. The aim of this study was to gain a better understanding of the overall incidence and risk of significantly raised blood pressure in cancer patients who receive bevacizumab therapy. METHODS: We performed a meta-analysis of relevant randomized controlled trials (RCTs) identified in PubMed, Cochrane library, Embase, and American Society of Clinical Oncology conferences. Overall incidence rates, relative risks (RRs), and 95% confidence intervals (CIs) were calculated using a random-effects model. The primary clinical endpoint was significantly raised blood pressure (grade 3 or above). RESULTS: A total of 12,949 cancer patients with a variety of solid tumors from 19 RCTs were included in our meta-analysis. The overall incidence of significantly raised blood pressure was 8% (95% CI 6-10%) among patients receiving bevacizumab. Bevacizumab treatment was associated with a statistically significant increased risk of developing significantly raised blood pressure (RR 5.38, 95% CI 3.63-7.97). The RRs of significantly raised blood pressure in patients receiving bevacizumab at 5 and 2.5 mg/kg per week were 7.17 (95% CI, 3.91-13.13) and 4.11 (95% CI 2.49-6.78), respectively. Among cancer patients, those with renal cell carcinoma (RR 13.77, 95% CI 2.28-83.15) and breast cancer (RR 18.83, 95% CI 1.23-292.29) who received bevacizumab at 5 mg/kg per week had a higher risk of developing significantly raised blood pressure. CONCLUSIONS: Among the patients included in the trials analyzed in this meta-analysis, the addition of bevacizumab to cancer therapy treatments significantly increased the risk of significantly raised blood pressure. The risk may be dose-dependent and vary with tumor type.

PMID: 20401474

[Laurel]

Flori,

Try a bit of dried seaweed crumpled and littered over your salad, or in some miso soup. I have found that my blood pressure rises as I do not seem to have enough Iodine in my diet. I do not use salt to cook or add to foods, but with all the sodium in our diets I never considered I'd need some Iodine, but apparently it isn't added to salt they way it was in the past. I had a BP that was creeping up to where yours is ever since chemo. I finally added the Iodine after some research on elevated BP and also take a herbal supplement called Hawthorne. One 500mg cap daily has my bp back to normal. Also, Flori, pain will shoot your BP into the stratosphere.

Hoping and praying you get answers and relief.

[SoCalGal]

I think the virus part has passed, no fever and my headache is almost 100% gone. I'm sure in a few days I'll start to feel my energy return. After day 2 of hydration, my b/p was 120/72.

I am taking a chemo break for a month. After 2 days of sitting for hydration and talking to my doc about my quality of life of late, my frustration with side effects and feeling like crud, she says that it would do me some good to just take a break. She said that since my disease is mostly stable, it would not hurt to take a month off. I am going to focus on the time off, and what it can mean to me in getting my "me" back. I will be able to step up the exercise, eat better, and do a bit of travel.

Thank you for your input and support. I printed out every response, cut them out, and taped them alongside my mirror. (Well some of them I just printed out to discuss with my doc, Lani, Brenda and Rich!).

It really does help to remind yourself to focus on the good. As Chris said, one step, one breath at a time.

With gratitude,
Flori

[ElaineM]

I am very happy to hear you are feeling better Flori. Enjoy your month vacation from treatment. You deserve it !!

[caya]

Hi Flori,

Enjoy that month long chemo break. And eat some chocolate, it's good for you...

xo sweetie.

all the best
caya

[Bill]

Glad to hear that you're feeling better, Flori! It sounds like you and your onc. are in agreement that a break will do you some good. Sounds like a great chance to do all the things you mentioned, and maybe you can re-post that pic of your daughter's tattoo while you're at it. It's a classic.

[Emelie B]

Flori,
So glad you are feeling better. A break will help with everything. Just don't do what I do and try to "do it all" at the same time. Rest, eat well and enjoy!

[juanita]

Just adding some hugs and prayers for you!!!!

[Jackie07]

Flori,

Enjoy the off month: recharge, refuel, regroup, and redraw the battle plan...

[CourtneyL]

Just wanted to chime in and say that I hope you are feeling better, Flori. And I wanted to offer you some words of encouragement from one of my heroes:

“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” – Eleanor Roosevelt

[lkc Gumby]

Hi Flori, I've never written directly to before, But have often read your posts. This one hit me, as I felt your" desperation"
I am hoping you have just a simple virus and are feeling much better soon!

[Soccermom]

You are an amazing woman,Ms Flori...I KNOW you will flourish with this break and enjoy this time doing something for YOU!
Marcia

[Karen Wheel]

Sorry I am late in responding to this ---am trying to catch up on posts and just read this --- you sound like you just need a good girlfriend to come over and let you scream or like I do .... cry!! :-) Yes, the doctor idea is good too - however I find that the doctors here (maybe its what gets lost in translation as I am not ITALIAN!) but... they seem to just poo-poo my questions and when I tell them I have a headache (migraines if I don't sit down or go to bed) but they seem to behave and comment as though I am making it up. I think honestly for me it is the Herceptin.... as they did not let up after I stopped chemo ... and I didn't do all the drug cocktail you have done, so I have not walked in your shoes, but I do understand that pain is debilitating!

I don't think you are clinically depressed - and I don't think more drugs will help that state. I think its just that combination of all of this therapy --- it is heavy. Don't kid yourself! I've only done a year (see my signature) and I finished Herceptin last week, but now I still have mornings (like yesterday) that I woke up (AGAIN!) with a headache and I found my self in the kitchen making my carrot apple juice (morning coffee for me) and I just couldn't stop crying... no reason, I should be happy, I should feel great but I'm still bummed. Its NORMALE! (I love that word in Italian!) but .... you have to hang in there and try to limit the drugs but some times we need them to stop the pain... so, I know. I have stopped trying pain killers as here in Italy I haven't found anything that really works and so it feels like I am just taking pills for the fun of it - so I just stopped and now, well, I go to bed, or go down to the beach and walk the beach and just sometimes sit and watch the waves and hug my dog. It seems to at least help more than endless pills that don't really dent the headache. I actually (sad but true) have more success with a glass of organic red wine than a handful of aspirin or Advil gel caps --- miss those as I have taken them all and can't buy them here! SHOOT!

But .... I would highly recommend some of the advise on checking the brain MRI (I need to have my doctors really look at mine this next week when I have one scheduled - as I copied and saved Hutch's response above to make sure I don't have this same thing) and .... if you are open to it - maybe trying some of what I am doing with a combination cure of natural and medical medicine... ?

Few books that you might get a lot out of are:
"Cancer Battle Plan Sourcebook" --- (see my list below) and then if you aren't up for reading - and you can order these on line (amazon.com has used copies even for like half price) but "Beating Cancer with Nutrition" is a good one as it has a 30 minute CD with it for a audio overview of the concepts in the book and I found I listened to it a bunch of times and now am digging through the book on my non-headache moments ... or on the beach!

We really can give our bodies enough of the right foods that we can literally help it strengthen and start fighting the cancer on its own... I think you need to really look at nutrition, as it has helped me a lot with energy levels and sleeping better (another issue with our treatments is it messes up sleep and then you feel more like crap every day without good sleep!) also, juicing is an excellent way to get lots of minerals and vitamins into the body without having to eat a barrel of veg raw and digest all that fiber!

Feel free to email me if you want --- wheelistic@yahoo.com
I am on and off line as we spend about half the week at the sea now --- and I need to figure out some sort of satellite set up for email there as its 40 minutes from a town! UGH!

Few of my favorite sites with loads of information:

http://www.i-amperfectlyhealthy.com/index.html
http://www.cancerfightingstrategies.com/index.html
http://www.carcinomacancer.org/cancer-and-your-ph-factor.html
www.drday.com
http://www.cancerrd.com/
www.livingfoodsinstitute.com
http://cancermonitor.blogspot.com/2009/06/holistic-treatments.html
http://www.creativehealthinstitute.com/wheat_grass.htm
http://www.healthquarters.org/
www.gerson.org

Favorite Books:

o The Cancer Battle Plan Sourcebook (this is the updated version) - by David Frahm
o Crazy Sexy Cancer Survivor – by Kris Carr
o Beating Cancer with Nutrition – by Patrick Quillin PhD, RD, CNS
o Eat to Live – by Joel Fuhrman, MD
o The Gerson Therapy – The amazing nutritional program for cancer and other illnesses – by Charlotte Gerson and Morton Walker, DPM
o A Cancer Therapy – Results of Fifty Cases – by Max Gerson, MD
o 50 Essential Things to Do -

Live long and strong –
Karen