A place to greet and meet newbies to stage III
Comments
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Ay DD, sorry to hear that you were having a hard time!! But as the ladies said it crying is part of the process and a good cry every now and then is a good way of releasing stress and a natural way of body to release toxins :-)!!!
The delay in chemo won't have a big impact since it kills both cancer cells and healthy rest assure that the cancer cell are getting their butt kicked.
I had my blood level go down too (not that down as you) but during my 3rd-2nd last chemo I decide to resume back eating eggs in the morning and at my last chemo, mature white blood cells were great. My FIL had colon cancer 10 years ago (he's a 10year survivor) mentioned that exercise helps with the wbc. Try to get a bit of it included in your day. Walnuts, Brazilian nuts are good to include in your diet.
There a diagnostic scan that you might want to ask for from your doctor and they can see how much the cancer is shrinking and that might put your mind at ease.
Being strong means have a little meltdown once in a while as you know you will rebounce back!!!!
You are doing great and hug those dear to you and kick some cancer's butt!!!
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I've had strange pings and pains radiating from my armpit through my foob quite a bit. I see it as progress! We all hit walls as we go down this road. I'm like you DancingDiva, I am all smiles and "business as usual" with everyone, even at work, but sometimes on my drive home from work the waterworks start and I have my little pity party. It's ok to do that, it therapeutic.
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DD, I had nerve pain issues prior to my surgery. It was from the biopsies they did. I had multiple areas biopsied and one of them aggravated a nerve. There were all different kinds of sensations, rug burn, itching, pain, numbness, tingling.....
My WBC's have been all over the place. Has your MO talked about neupogen or neulasta? It is commonly given the day after A/C treatment and is specifically for regenerating your WBC's.
Ativan or Xanax are great friends as we trudge along this path. It is too difficult to always be able to "keep it together." Melt down when you need to, but always remember to regroup! Not easy, but possible. Night time is the worst, our brains don't seem to have a shut-off switch. Ironic that we are fatigued during the day and the minute we lay down in bed it is difficult to sleep. It does get better. It takes awhile, but it does get there.
Hope you are having a better day today.
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I want to say thank you for responding, to all, u have no idea. I feel like I'm getting a big hug and I so needed it.
My situation is a big wierd as I had shooting pains before biopsy/surgery so now that I have them afterwards, I don't know whether it's nerves regenerating or whatever or it's the cancer growing. it's not as bad as before but any discomfort starts freaking me out. AND more than half the tumor they took out, they took out be cuz I told them I had pain and thickening, they couldn't even see it on the US. a month ago, I had an MRI done for arm pain and they saw my breast too and that didn't see anything, but who the hell knows, maybe it's growing super fast, it has been known to happen.
Most of the time I get ,"I don't know", to a lot of questions regarding scar lumps, itchiness, pain, dimpling. They either really don't know or won't tell me more. The most I can do now is get chemo. The BMX will have to wait. If I actually think about the facts, I'll just freeze and think negatively. And yesterday I just dropped.
This is all hard as all you super girls know. And we put the brave face on and just keep going most of the time. I am not going to make this thing ruin my days.
I have been on the 3 wk AC regimen so I was not getting Neulasta. I will be getting it after round 3 so this doesn't happen again. That thing is so expensive!!
Hugs to everybody. And to a better wk-end.
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Start taking Claritan, or at least take it 3 days before Neulasta and 3 days after. One of the common side effects with the shot is bone pain. I have allergies anyway so I am taking it everyday now and I hardly had any bone pain at all, just a little in my hips.
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DD for the cost of neulasta there this program called Victory program that cover the cost of the injection. I will send you the info when I get home and you can inquire if they offer the same program in Quebec. It's worth a try!
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Claritin! Yeah! It works, big time. I had Neulasta after each round of chemo and my onc said take Claritin in the morning and Benadryl at night. I don't think they really know WHY it works, but it sure does.
Just to test it, I went without it for one of the chemo rounds and was achy and miserable. The bone pain was like a toothache in my back, nasal bones (weird, I know) and hips. I didn't go without my Claritin again. And you can buy it super-cheap from Costco (loratidine).
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thank you for all the info ladies...Lolis I got the victory program info already thank you. Had a better day today...not thinking and marching ahead.
Just finished playing Life with the family. Funny all these things I got during the game that were appropriate...Best Forehead (now that I am bald)...best smoothies (all these green drinks)....wierd, but funny.
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I'm glad you had a better day, dancingdiva. I didn't get a Neulasta injection after my first chemo (due to a screw up), and my WBCs tanked like yours did. After that, I did get Neulasta, and they were fine. Incidentally, I didn't experience bone pain with it. Not everyone does, but the Claritin is a good idea just in case.
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For what it's worth, dancingdiva, my WBC counts were as low as yours at one point during the AC and I still finished my four AC and went on to finish my 12 Taxols.
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Nerve pain - I am almost 3 years out from a UMX and I still get nerve pain and shooting pains quite often!
I'm used to those, but the thing I don't like is when I get the phantom pain that my non-existent boob itches out
in nowhere land. Very strange feeling. I have that a couple times per week even still.
No longer do I think it is cancer. It seems normal now. It will get better!!
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I have no great words of wisdom Dancingdiva, but lots of compassion! I am so sorry you have been in a dark place, but the chemo and such can be a though journey! This may sound very simple, but I always planned a lil "happy" in amongst my treatments. A moment to look forward to that would help get me past the darkness...thinking of you!
Genny5775...I too have grade 1 BC. MD Anderson told me that chemo had a less % of being effective on my cancer and that my hormone ( Als) had a higher % of being effective! Hope that made sense...bottom line your hormone treatment is the more effective treatment for grade 1 highly ER+ PR+ BC cancer!! I had surgery before chemo so I have no idea if it was effective, but I doubt it! Thankful for my Al's each day! As long as I eat right and exercise ( keep inflammation down) I have very little SE...hope the same for you!
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hopefour, my MO also told me that hormone therapy is more effective on my type of cancer than chemo. I think it was more that it was invasive lobular rather than the grade. He didn't mention the grade. I did have chemo because the oncotype test showed just enough likelihood of recurrence that he thought it was worth it. But he said it was Tamoxifen and AIs that are more effective so they're going to be my best friends for 10 years. I'm on Tamoxifen now for 2-3 years then he'll switch me to something else.
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Thanks ladies, I did know that about grade 1 and ILC, and I'll be getting on the AI's within the next week or so. I was just shocked that the chemo was ineffective and then to be told I had to repeat the metastatic workup to make sure it didn't spread while I was getting chemo. It was a lot to go through for nothing, and may have even done more harm than good. I mean I know there are no crystal balls but I wish I had skipped the chemo and gone right on the AI's. To bad they don't do sensitivity test to find out what works on the CA cells first, I know they exists but are not standard care yet. And I guess a lot of insurance companies won't pay for it. I got my PET yesterday, on pins and needles waiting for the results.
DancingDiva, hope you're doing well, hang in there, it's tough but you'll get thru it. Pace yourself and take lots of naps. I described it like this: I used to wake up every morning with a full tank of gas, I'd get everything done throughout the day and around 11:00 my gas light would come on indicating it was time to wash my face and brush my teeth and get ready for bed. While going thru chemo I woke up with half a tank of gas. I could still make it till 11:00 but had to park the car throughout the day or I'd run out of gas. Hokey analogy I know but it made sense in my brain and kept me from feeling guilty about resting.
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Genny - sending you lots of good vibes for clean PET scan results!
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genny, I'm hoping for good results from your PET scan. When do you expect to hear?
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Woohoo!! Thanks everyone, my RO called me at 7 tonight to tell me PET was all clear! I will be starting rads week after next then do a clinical trial with AI's and a new drug (or placebo).... wow, what a relief! Looking forward to giving advice on 10 year survivor thread in 2024! See you all there!
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genny, that is awesome news! And how wonderful your doc called you tonight instead of making you wait all weekend.
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thanks ladies for your concern. I've been sticking to living in la-la land in order to keep going. I had my 1st support meet at the wellness center here for newly diagnosed patients. I was expecting to be the worst and I pretty much was. Met someone who was in a similar boat. It's kinda depressing , but I keep going. My bloods came back well on wed, so I had chemo #3AC on Thursday thru the port for the 1st time. I also went by myself since I didn't take an Ativan b4 hand. Psychologically wish I was with someone. Chemo went well but the tiredness hit immediately and I am having more nausea than b4 that not even Emend can support all day so in the evening I take Meta something for it. Got the Neulasta yesterday....waiting for the bone pain. Have not been eating much. All I want is junk food after chemo!! It's 3am here. Just got up to have yogurt after daughter knocked me with hand in my face and woke me up. We did some meditation b4 bed and she crashed in mine.
I asked the MO how do we know if thus working. He doesn't't. We just hope for the best. I guess getting PET scans for the whole body if we could afford it would be the thing to do? I had an MRI for just an arm and breast and it cost me $1300. Sometimes, I just wish I was super rich!! K, most times
genny, hope ur scans go well!
Wish u all a great wk-end!
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Genny, I'm glad to hear the scan was clear. The chemo might have been ineffective on the nodes but it seems like it killed those straggler cells. And the good news is that with your type of cancer being so responsive to hormone therapy, it's all uphill from here!
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dancingdiva, I know what you mean about being worse off than others at a support group. In my case, it wasn't actually at a support group, but just various women at my church who had had breast cancer. People were constantly introducing me to someone else who'd had breast cancer and is fine now years later. Come to find out most of them were stage I. I didn't find it helpful since their situation doesn't apply to me. I did go to another group where I wasn't the worst. It was one of those "Look Good, Feel Better" sessions put on by the American Cancer Society. There were two women in there with stage IV cancer. One of them had been given a pretty dire prognosis, and was weepy. I felt so bad for her. In a way, I was glad not to be the worst off for once, but then I felt guilty even think that in the face of where these other women were.
Regarding whether the chemo is working, I had the same question and got the same answer. They don't know. They just hit me with shotgun approach of treatment - surgery, chemo, radiation, and Tamoxifen and hope it does the job. I thought they'd do some scans to check for a recurrence at least, but they don't. Apparently, studies have shown finding a recurrence on a scan doesn't buy you a longer life over finding it when symptoms occur. Also, the scans produce a lot of false positives causing women to go through biopsies and a lot of stress for no reason. Frankly, even though I understand they're logic for not doing scans, I still wish I could have one maybe once a year. I'd gladly put up with the stress of waiting for results or having to undergo a biopsy only to find it negative. I'd prefer that to the stress of constantly living in limbo. But that's just me. A lot of people really hate waiting for the test results. If I was super rich, I might figure out a way to get one and pay for it myself. I guess we should both start buying lottery tickets!
You might not get bone pain from the Neulasta. I didn't. Fingers crossed for you.
I hope you can keep the nausea under control. Eat whatever sounds good and doesn't upset your stomach. I ate a lot of mashed potatoes and ice cream. Comfort food.
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Genny glad you scan was clear!!!
DD it's okay to be weepy. I find that letting my emotions take over sometimes it's better. The other day I started crying for no reason. It's the hormones too.
I am 1 week PFC and seeing the RO on Wednesday to talk about radiations.
Yesterday I took my C binder out and read it all. Hubby asked me why I was doing it but I had no reason, maybe to just to go over it and feel like that I discovered the lump when I did as the leftie was a ticking bomb. Also, hoping that the rightie stays a good girl.
How often do you ladies do self examination on your other breast?
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I can relate to the fact that everyone "knows" someone who had breast cancer and can't wait to hook you up with them. It's meant to be kind. But wow...
I was at a party where a friend went on and on about how another friend had survived, and she finished the story with, "and she was a STAGE TWO!" I wanted to say, "Gosh, as bad as that?!"
Dancingdiva, are you taking Claritin to ward off the Neulasta bone pain? It really worked for me.
Weepy...oh, yeah...my husby and I used to call it "the shivers," when I got overwhelmed with everything and sobbed. It's OK. The overflowing of tears and emotions is a pressure valve that needs to pop sometimes.
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I can't believe we just wait for symptoms even though this is protocol....logically if I find it earlier it's better just like if I had found my BC earlier instead of waiting for symptoms and now being where I am at. I don't get the whole scan thing except for costs involved. I need to start saving up!!
The nurses and pharmacist told me to wait for bone pain after Neulasta so I'm just waiting. Then take Tylenol. They didn't want me to take Claritin. Since I had neulasta anyways, I'll be doing dense dose for the last two AC. At this point I have nothing to lose but 1 less week to recover. So I'm going for it.
As for breast examinations....my breasts are so dense even MO had look on his face. Somebody mentioned that in the US it's the law now to tell u if u have dense breasts to get an MRI done. I wish somebody had insisted on this with me. In canada I have not heard. like I've mentioned b4 US was even useless for me so if u do have dense breasts, I would simply go for MRI no matter what.
Bcuz I waited 4 wks between AC due to low blood count I got my period! What the hell. I think that's why I got it. Wierd. Good night ladies and great days.....DD
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Dancingdiva, I ask my MO the same question about finding a recurrence earlier rather than later. He said that even by the time it shows up on a scan, it's spread everywhere. I know I should believe him and just let it go, but it's hard. I want to feel like somebody has my back, in the military parlance of the day, but I'm not really feeling like that. Maybe with time.
I think that new law requiring them to offer an MRI if you have dense breasts might have just gone into effect in January. Too late for me if that's the case. The radiologists who read my mammograms over the years always said that the tissue was so dense that it was hard to see anything. I always wondered why the hell they didn't do an ultrasound or an MRI. Other than cost. I guess an ultrasound is useless if you don't have a particular spot to focus on like something suspicious they found on a mammogram or a lump. One of my docs told me that you can see all sorts of shadows and things on ultrasounds that may or may not be anything, so they really need to have a localized area to look at.
Sorry to hear you got your period. That was the one silver lining for me when I had ovarian cancer. No more uterus. No more periods to deal with.
Sleep tight!
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I had mammograms every year for 16 years, all came back as extremely dense with no abnormalities seen. No one ever told me to question it. The mammograms gave me a false sense of security. Those laws vary from state to state, I know here in Ohio they're still working to get it passed. Eventually I think it will be the standard of care for dense breasts but too late for us girls. Wish I had known before it got to 10 lymph nodes.
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AZ just passed the Breast Density Notification legislation. It will go into effect October 1st. I spoke before both the AZ State House Health Committee and AZ State Senate Health Committee on behalf of the bill. It was during my chemo treatments. What better person to speak than a bald headed, one breasted, woman diagnosed with Stage III breast cancer who had a normal mammogram 10 months prior to diagnosis? There were 4 of us who spoke, including the radiologist who helped draft the bill. There was talk of heavy opposition from the medical community, but no one ever spoke in front of the committees, and it passed both unanimously.
Areyoudense.org is how I found out about participating.
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I feel REALLY worried about this phrase - if we find a recurrence or a new cancer then its already spread everywhere? Is that really true? If so I would feel doomed and yet there are loasd of Stage IV people here on this forum who keep going for years....so how can this be true?
"I ask my MO the same question about finding a recurrence earlier rather than later. He said that even by the time it shows up on a scan, it's spread everywhere"
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on a scan, if its anywhere but your breast or axilla, then you are now stage four. its in your blood. thats how it moved. but, like you, i am all for catching it ASAP. there is what they call oligometastasis. where there is just one place it is in, and so, a lower tumor burden for your body to bear. and, you would think, before it got big enough to break a bone, cause difficulty breathing, cause swelling in your brain, yeh, you would try to fix it. and here is the best part: if that is true, then why do follow up mammograms!?!
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Hi,
My surgeon said that if it mets occurs then it doesn't matter if you catch it when it's 1cm or 10 cm, it either responds to treatment or it doesn't. I know of a woman with BC lung mets the doctors gave her a few months but it responded well to treatment.
Here's to hoping the recurrence/mets doesn't happen!!
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