Starting Chemo September 2015; join us!
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I had the worst day. I met with a psychologist - trying to deal with the massive impact of cancer on my life. I met with a woman who made me feel so small, so worthless, so much like garbage. I felt like she just magnified every feeling that I had gotten from the medical caretakers- my feelings didn't matter, making too much of this "cancer stuff". I didn't want to go back but I am being forced to go back today. She told the therapist with the cancer center that "I needed to get over myself", "cancer was going to be a part of my life for as long I stay alive" so I needed to toughen up a bit more. I feel so lost. The person they sent me to for support is so much opposite to that but I have to go back today - it has connections to my surgery. I can't escape her.Exercise guru-OMG! Please just shout it from the roof top! So glad for you!
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Exercise - YEAH! Happy dance, happy dance! Woot woot!
Regarding everolimus - I'm taking 10 mgs. Because I've developed mouth sores, I'm almost 100% sure it's not the placebo because Arimidex doesn't cause mouth sores. They are not that bothersome. My WBC is low and has decreased from the start of the trial to 2.6. My ANC has gone down (1.5 to 1.0). Everolimus suppresses your immune system (though today, I was educated on the difference between the immune system we manipulate and the "innate" immune system we do not control which is likely what fails those who get cancer since your body doesn't recognize the cancer cells as foreign- who knew?), so be prepared to get every cold, stomach virus, etc. that you come into contact with and then be prepared to get an infection from the virus. I'm on my 4th round of antibiotics since my hysterectomy. They watch your blood sugar and cholesterol. After my initial trip to the ER, at which point we determined that I should not take my Arimidex with my study drugs, I have had minimal problems. Sore hands, sometimes numb in the morning - could be either drug. Decreased counts and mouth sores def. the everolimus. Very little taste to food also attributed to everolimus.
Other than those with advanced stage cancer, I am as high risk as you get for mets. I'm going to keep going with the trial. Theoretically, everolimus would be more helpful to somebody with luminal b and a Ki67 score off the charts due to a long explanation about the role of mTOR inhibitors in cancer cells. But who knows? Only God.
Because I was sick, I had to delay my dental work, so I start Prolia next week, wait 3 months, then get my mercury filling replaced, then 3 months later to another shot. So for those going this route, I'll report back next week,
I am TIRED. Very tired. VERY, VERY, very tired. But mentally, I feel great!!! It's like having a new and awesome brain in an old woman's body.
Grey, no offense, but that weight sounds too low. I'm teetering at 128, though my MO said it was not too low. He asks me every time if I am losing weight, so clearly he considers it. My BMI hovers around 18, I can't imagine lower than that would be healthy. Yes, fat cells store estrogen, so keeping a good weight is a good idea, but I've never heard anyone advocate for anorexia for cancer prevention. I have always been thin and I still got 99% ER+ cancer! Anorexia causes a host of other problems you don't want. My naturopathic doctor said to eat a can of asparagus every day for my kidneys. It makes me dry heave. Not doing that. Also not giving up my coffee habit. I have to work, mother, LIVE. However, desert is gone forever. So is alcohol. Sayonara.
Ladies, you have so much more HAIR than me! I love it. I am growing thick, short chemo curls. Xo.
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I feel like I have a problem with all medical people. I have started to feel like I am losing weight but it hasn't shown on the scale. The stress of dealing with BC has pretty much taken my appetite. But my naturopathic Doctor has a point- I am looking into getting some strenuous exercise so I can lose weight and maintain muscle and bone mass. I checked with my pharmacist friend and the medications prescribed have serious side effects (a couple potentially fatal) when combined. That is not including the "natural" medication that is in Chinese that my naturopath has prescribed. It makes me so sick to my stomach- food is not even on my mind. I brought the information to the doctor's attention - you guessed it- was told to take my melds and shut up. I feel scared about the chance of recurrence and it won't let me move forward. I would cut off a limb if it would prevent recurrence for sure. But there are no guarantees. That is what makes me crazy. I am a scientist. If I do the same experiment twice, exactly the same way, I get the same results. My asthma drug always does the same thing. How can cancer drugs be so different? One day they work- the next day they stop working. In some people they work; in other people- the medications almost kill them. I can't stop worrying about recurrence. It makes my stomach hurt. I will drop my weight to 100 pounds. I just need to stop eating anything. I am working on it. I like food but I'd do anything within moral parameters to prevent a recurrence. 0 -
I have done an exhaustive amount of research (even my MO commented on it, lol) and come to the conclusion that there are 1,000 different opinions and it's really just a crapshoot outside of the maybe 4 known risk factors. And even those don't mean much.
One thing that has really helped me move forward is to prepare for the worst. I am compiling all our accounts, passwords, due dates, retirement accounts, life insurance, etc. for my husband (I manage all of that and the finances). I put him on all my credit accounts and the savings account that had before been only in my name. I opened an email account for our children when they are old enough to read it, to be determined by my husband or their custodian, so I can send them funny pictures and stories.
I wrote a poem for my children, to be read at my funeral if they are old enough, or privately later if they are still little. Most people wouldn't understand doing this, but I think those in the midst of this will. I have a lot of peace now, knowing that life here will go on and be okay without me. And if I make it another 50 years, then praise God for that too. Here is my poem.
God loves us
more than we ever will know,So He sent
love to follow us wherever we go.God’s love is
much deeper than the deepest blue sea,And higher
than the top of the tallest tall tree.God’s love
never ends, it is faithful and true.There’s no
place, not one, where His love won’t reach you.You can climb
any mountain and soar through the sky!God’s love
will find you. God’s love can fly!You can never
outgrow the love of our Lord,It stretches itself to love you even more.
On days when
this world has you feeling let down,Know that one
day our God will erase every frown.Cry if you wish, feel the wind in your hair,
Then release
all your worries into God’s loving care.When you’re
feeling forlorn and you can’t see God’s face,Remember, in heaven is your special place.
If some day
you wonder if my words are true,Just open
your Bible and God’s love will greet you.When I’m no
longer with you and it seems so unfair,Please talk
with our God, He will always be there.God sent Jesus to us so we'd never be lost,
And at Calvary, poured out His love on the cross.
I loved you
more than you ever will know,So God sent
love to follow you wherever you go.0 -
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My husband has a man cold. I want to run for the hills, lol (by the way, I had this same cold for week... and kept going). Anyone else?
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YEAH EXERCISE! Did you do a small celebration and OMG they are fast on the results thank goodness!
Everyone's hair is coming in great!
HAHA Man cold. Guys are just big babies, I swear.
I went to a retreat this past weekend and at first I was apprehensive but by the end it was really good for me. It helped with my perspective and face to face connection with more bad ass women like us!
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Tiger, I think it's awesome you did that.
Ummmmm... my hair is not coming in "great." It's coming in wild and crazy, kinky and curly, with waaaaaay more gray than before! And not cool spiral curls, like I had before I had kids, weird curly, like bed hair. I actually looked better bald, so I'm just going to have to ride this one out. But everyone else looks lovely!
I get my first Prolia injection tomorrow... anyone with me? I'll report back when I see how it goes. There is no way I could be any more tired than I am, so I figure it's another 10 more months and then things have to be on the upswing! My hands are peeling now too from the everolimus, but I'm glad I'm getting the drug, so I'll take it.
Xoxo ladies!
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hello, may I be added to the group? 9/3/15 was my first chemo.
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welcome jojo!
I woke up today, sore all over and flu-like from the Prolia yeaterday and literally could not get out of bed until 8:30, but by noon I had bounced back and was making muffins and had company over.
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cajunqueen --- hmmm sounds like Prolia hit you hard, but I'm glad you started feeling better so quickly. I'll be following your experience with Prolia. I already had osteopenia before my bc diagnosis, but because it did not progress during chemo, the docs did not start any bone-strengthening meds yet. But since I'm on an AI now, I'm expecting I'll need something before long. I doubt my stomach could handle biphosphonates (I've got chronic mild nausea now from who knows what, and even stuff like tylenol gives me heartburn). The oncologist I asked said they don't give Prolia during Herceptin anymore, because of bad skin reactions some patients have had; I'll have to wait until after Herceptin if my bones thin anymore.
Welcome Jojo! We're a bit quiet now, but this is a fantastic support group!!!
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So Sorry Cajun about Prolia, I hope that you bounce back fast!
Anyone having issues with low red & white blood counts? Mine are hovering around RBC 3.4-3.5 WBC 3.2-3.6. I know it takes awhile and just wanted some insight if anyone has had the same problem and/or what they might have done to improve them?
any pointers would be awesome!
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Unfortunately, I feel like the Prolia was the straw that broke the camel's back. It's been a downward slide every morning. I can barely get out of bed. I panicked and emailed my MO. I'm determined to get back up on the horse tomorrow. Grrrrr.
Yes, I still have a low WBC - 2.3 - 3.1. My RBC has normalized. But everolimus suppresses the immune system, so I'm not sure what the cause is. I would imagine you could up your iron intake for the RBC now that chemo is over. I tried that during chemo and it didn't work, but it might work now. Don't they say that it takes about 6 months for strong chemo to exit your system?
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Sounds awful, cajun
I hope your MO can give you something to help you feel better soon0 -
Thank you. I asked my psychiatrist to up my adderall dose and am waiting on a reply. I am changing the Everolimus to the morning. Until I've exhausted all options, I'm going to keep praying for the strength to get up each day and trust that God will provide a way out if I reach the breaking point which I thought was going to occur this morning, but at 8:00, I finally managed to get up, got the kids out the door, and to work on time. I did my make-up in the car and brushed my teeth in my office, lol. Whatever works! 10 more months on the Everolimus...I think I can, I think I can, I think I can.
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Cajun - You Can! We all got this far, we definitely can handle what they throw at us!
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God is faithful!
Midnight - up with K. 5:30 a.m. - moved teething son to our bed. 7:30 a.m. - boots on the ground. 8:30 a.m. - kids at preschool. Thanks for the encouragement ladies!!!
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In other news, I had my follow up appt from my hyst/ooph and mentioned that I constantly feel "aware" of my bladder (which sounds really strange, but that's the only way I can describe it) which makes me constantly think I have a UTI, even though the actual UTI cleared up weeks ago. He said it's common after a hyst. because the uterus is adjacent to the bladder, but doesn't usually last this long. He thinks it's contributing to the fatigue. He gave me a rx (I really didn't want any more drugs, ugh) to numb the bladder from the inside or something of that nature to see if it resolves. If it does, he says there is no problem and the symptoms should subside over time.
Has anyone else had this issue?
My chemo curls are out of control! I tried to tame them with a large headband... fail!
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Today is 11 months since I found the lump. This past weekend's Juhannus/Finnish Midsummer celebration I went to watch a traditional bonfire, lit each year to "destroy away all the bad stuff". I tried to imagine it burnng away all the pain and terror and misery of the past year, but as I still battling sore nails ripped down to the quick, fifth week of this headache, tinnitus, off/on nausea, and now a week of stabbing ear pains and bouts of vertigo, my "cleansing" will have to wait until next year, I guess. I feel abandoned by the cancer clinic, which just wants to "follow" my headaches etc. "for a few more weeks", because I haven't had a seizure (!) although yes I am grateful they contnue to dose me with the Herceptin... So I booked a private ear-nose-throat doc for later this morning, maybe he can stop the stabbng pains and tinnitus and dizziness enough so that I can enjoy a vacation trip with my son next week. Really scared right now
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tessu, I'm so sorry you are going through this. sending you big hugs and prayers for pain free days and answers soon. Xo
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hi cajun, and THANK YOU for the hugs and prayers. Honestly. You're being listened to.
The ear-nose-throat doc said the dizzy spells are "benign positional dizziness" from crystals in the ear tubes that make up position sense --- and showed me exercises to help it go away faster. But --- because the tinnitus and the stabbing pains are one-sided and have nothing to do with the dizziness, he sent me for a hearing test, which revealed a hearing deficit on the left side --- which meant I needed a brain/ear MRI. By a huge stroke of luck (somebody canceled) I got that done today also --- and there is NO cancer --- no bc mets, no nerve tumor (which was the other thing to worry about, per ear doc), nothing. So the hearing loss and the stabbing pains and 5-week-long headache are being lumped into "nerve damage from chemo". Not fun, but not more cancer. Repeat: NOT MORE CANCER.
I am sitting on our balcony with a beer and a huge bar of chocolate. Thinking of making that a double, h*ll tonight with "every alcoholic drink raises bc risk". Husband can cook dinner tonight.
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Tessu
So sorry to hear about the tinnitus and headaches. that is wonderful news about the MRI hopefully that put you at ease a bit even though it did not give answers to your situation. I have found that there is a potpourri of Side Effects from the last year and few doctors that have a clue rather than telling me to just deal with it. About the headaches this was something I got strongly on Arimidex and Femara. It took 7 weeks on Tamoxifen for them to finally go away. I am still not sure what it was from. I tried water,sleep, removing antihistimines(claritan) and exercise could not get them to budge and then one day they just stopped. as for the tinnitus that is really sucky.
Cajun yes I had that symptom after my TAH. It went away after a 2 months. My MO gyno doctor recomended :hydration, coconut or olive oil on/in the girl region everyday, urinate right after intercourse. I do all of those things.
About two weeks ago I got up and it was like the sun has finally come up. I am feeling so much better. I still am dealing with a carload of chemo/surgery problems but I could function and think Clearly. Unfortunately this does not make me want to revisit Femara because Tamoxifen is a piece of cake compared to that. I am in a tough situation as only one of my tumors was ERpositive I could suffer and suffer on arimidex, lose my bones, and have a heart attack only to get the other cancer back. Until I fix my hands I have decided to take Tamoxifen and pray and hope for the best.
I have found that dealing with the effects of chemo and surgeries are just sucky. No doctors have good answers. I think that the problem with my hands is coming from my shoulders and breast implants but they want me to have hand surgery for Carpal Tunnel and if that doesn't work then they will look at that as an option. Also they know that it is inflamation but have no explanation of what is causing it. I am thinking of fasting for a few days to see if I can cut the inflamation. If my hands improve that will atleast tell me it isn't a pinched nerve. So far nothing I have tried has changed the symptom.
also about the blood counts. I am not sure I will go pull my test from last week. I know my counts stayed low for a really long time. on other news my doctor just called me and told me to up my vitamin D as it is still low.
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tessu, YEAH! Three cheers for NO MORE CANCER. I know that it doesn't make the physical experience any more pleasant, for which I'm sorry, but that is a prayer answered.
exercise - I'm glad yours resolved. I'm now 10 weeks out with no improvement. My UDS showed protein in my urine and an abnormally high ph but my blood work is normal. Nobody seems to know what to make of it. You're right, the myriad SEs from all this treatment are strange and unexpected.
I also have issues with my left arm after radiation. I had no mobility issues prior, but now it hurts to stretch. I still wake up with numb hands some time and phantom pain where they cut out the lymph nodes on both sides. Have you tried cutting out nightshades and increasing antioxidant foods? I regularly eat baker's chocolate (no sugar, 100% cacao), which is a great source.
As far as Tamoxifen, you could always switch down the road. Didn't they show that the benefit was similar for those who switched or was that only if you switched when you hit menopause? Is the absolute benefit between the two that different to start with?
My oncology nurse told me I need to start gaining weight. I was warned anorexia was a SE of everolimus, but I didn't realize that nothing would taste like anything and most things look disgusting. I wish they would just put some superfoods into my port every day so I don't have to dry heave over them. Vegetables are particularly offensive.
ETA - exercise, did you consider asking for the brand-name AI? As weird as it sounds, I've read that some people cannot tolerate the inert ingredients in generic meds. Just a thought. Xo.
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Cajun/exercise - Yes I read the same when researching AI's and Tamoxifen. Worth a shot. I take 5,000 IU of Vit D per day, my last test was 42 out of 50 is where my doc wants me to be. Summer's here for most of us and hopefully you Vit D will increase naturally
Tessu - sorry to hear about your pain. I pray it goes away soon. Awful to have to deal with SE after all you've been through. Happy to hear that the MRI showed there was no cancer. Beer & Chocolate nothing beats that!
A little indulgence from this past weekend
An IPA Beer, hoppy tasty and worth it
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Hello All, I saw the mention of Carpal Tunnel and inflammation. I made it through started on Chem 7/14/2015 so I am a couple of months older than everyone else On this post. I took L- glutamine, B-6 and a B complex all through my chemo taxol and AC. I really am glad because my hands are really pretty good compared to others. Mostly I still feel the neuropathy on the bottom of my feet/ - crumbled socks feeling. I still take the B6 and a B complex or I get shooting tingles.
I am post surgery (breast conservation) triple negative so I do not take all the other drugs I have been reading about.
New study out I will probably start either Xeloda or Carbo in a trial next week.
Anyone in a vaccine study
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Beer! Looks so yummy. Enjoy.
Country - I would have done a vaccine trial if I'd qualified for one. I think that area of research is exciting. But, no such luck. I'm taking a year of 10 mgs of daily everolimus instead. Wishing you the best with your trial!
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Country, I signed up for a random NeuVax vaccine. I am not sure if I am getting it or not (double blind trial) but it came with the bonus of receiving Herceptin and GM-CSF. More info on the link below. I just need my echocardiograms to stay above a 50
to stay on the trial. I'm very interested in Cajun's trial.
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tiger, how did you get in being her2-?
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I'm HER- but I'm really a "2"
on the range the HER- can be 0-2 HER+ is anything above a "2"
I'd totally rather be a "0"
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I checked out vaccine trials a little and was accepted at MD Anderdon for NeuVax trial they are including Her- in the trial and they give Herceptin as part of the trial to Her- patients with the vaccine. I would have done it but you have to travel to Texas fairly often.
It seems that things have just changed somewhat for Triple Negatives like me. So there is another vaccine not sure of its name that just opened s trial for effectiveness. No data yet. I am considering that one through my oncologist . He will be part of it here in the Bronx, NYC. But he just gave me another option.
A trial of Xeloda and/ or Carbo
I am supposed to start next Wed. They will randomize me to one or the other. But you will know which because they are different Xeloda is pills but I think Carbo is IV
One of the gals that I correspond with from the blog did a Carbo trial at Dana Farber. I think she had a good result like her tumor shrank before surgery.
My tumor did not shrink after Taxol and AC
Although they said it was good that it did not grow during chemo I do not know much but I was called not clinical pathological clear or something not good CP? My tumor borders were clear but close and they removed 7-8 axillary lymph nodes.2 were positive but we knew that from the start from a fine needle biopsy
I opted for breast conservation. No right answers.
So Xeloda is big news for triple neg. And Carbo too. There never was anything before like Herceptin,tamoxifen or AI that some of you triple or double positives are writing about.
Does anyone know much about Carbo? I only now that there are a few different versions or types like carboplatin or cisplatin not sure
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