Calling all TNs
Comments
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I'm writing (knowing there might be a better place for me) but like others just looking for hope. 3 days ago, my sister, Age 32 was diagnosed with TNBC with 2 positive nodes biopsied when the 4cm tumot was. She is also 7 weeks pregnant. She is scheduled for a mastectomy on Tuesday, chemo to start when baby is 12 weeks. I'm petrified. So much negative research- after Tuesday they will know more on node involvement and I know that will help, they will also be testing for genetic mutations. This forum has been incredibly helpful.
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Tfosher, I'm so sorry to hear of your sister's diagnosis. No woman should have to go through this, especially when pregnant. Saying prayers right now that they are able to treat her and that the baby stays well also. Prayers and good thoughts to her, and to your family.
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Tfosher I just don't know what to say. What a terrible thing to happen when you are pregnant and looking forward to your baby coming. Once they have done all the tests you and her hopefully will have your minds put more at ease. Try and stay strong for her because she will need your love and support more than ever. Sending big hugs to you and your sister and saying many prayers for you both.
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Luv here checking in. I'm doing well - tumor markers dropped again to 188.5. Remember they were 2000+ a few months ago so the Gemzar is doing its job. I will probably have a scan in the next few weeks. Gemzar is rough on blood counts, though, so I am getting a half dose.
Kathy - I am going to call you in a few minutes.
(((TFosher and family)))
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TFosher- I'm so sorry about what your sister and you and your whole family are facing right now. Please come back any time you need support from this group. Also, make sure to only use reliable web sites. There are a lot that give inaccurate, scary info. The only othe one I can remember off the top of my head is the Triple Negative Breast Cancer Foundation site. (The other ladies will be able to think of some others) Your family will be in my prayers.
Annie, my little love, you made me cry with your post, but they were happy tears! Thank you for reminding me where my mind set should be.
Luv - I was gonna shake Pom-Poms for your news, but I think this is more appropriate.
::whips off bra.....shakes ta-ta's wildly::
Thanks for your call, my warrior friend. It was just the attitude adjustment I needed! -
Kathy- ROFLMAO!!!
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Michelle - Congrats on the excellent news! Hampton and I are doing another happy dance for you!
Kathyrnn - I just read about your update. I'm shocked of the recurrence, but know that you will find courage to take care of this again and I'm confident that your team will get you back into remission. Stay positive and know that we all care!
TFosher - That is upsetting news about your sister and I can't even begin to imagine what facing a bc diagnosis is like at the same time as looking forward to bringing a baby into the world. You have our love and support. Please let your sister know she can lean on us at any time.
Peb - Hello! I've been off of here for a while, but will send you an e-mail soon with the updates. For now, yes hair is starting to touch my shoulders (at end of neck) but still gray. I have not colored yet! lol I found an organic hair dye product, called Aubrey Organics, which is supposed to be good. I ran it through the Safe Cosmetics website, and other products that scored a 0 had the same ingredients as Aubrey. I couldn't find the current Aubrey one on the site, but an older version had a good score, and they have changed some ingredients since then, making it even better I believe.
Hugs to everybody!
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Ladies, all of you are my light, you make me laugh, you make me cry really hard, and I am in AWE of what I see and feel here each and every time. Sending you all lots of love and best wishes.
Kathyrnn - I actually had difficulty understanding that article. Did you understand it to mean that Paxitaxol actually makes some cells chemo resistant, therefore, those stem cells come back as metastatic cancer?????? I had paxitaxol and almost all of us have had taxol, so how can this be good news? Sorry, ladies, I am highly challenged with comprehending medical articles.
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Lovelyface I read it the same. Very worrying. I had Pacitaxol (Taxol for short). Where too from here. I wish to heaven they would find a cure for this damn curse.
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I just read the article you all were talking about. It is very worrying for all of us what this article mentions. Are there also other drugs in the same category as well, he only mentioned one drug as a reference, but there are likely other drugs? Did you see there is a name and phone number at end of article. Perhaps the author could do a follow-up article with exact statistics of what they found. If this new combination of what he is talking about can be a better treatment, how soon before it could be available to everyone?
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Adding to your question InspiredbyDoice - What about women who have already taken taxol, what do they do, just wait to see when the residual stem cells develop into metastatic cancer?
TFosher - I am so sorry to hear about your sister's diagnosis who is pregnant. Oh dear, chemo and pregnancy? My heart just breaks! I have to go outside and breath, honestly, I am walking outside. I think I had missed reading your post earlier!
Annie - love you!!!!! You are awesome!
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*KICKS SELF IN ASS*
If I had realized that this would upset those treated with Taxol, I never would have never posted it!
I went away from the article with a different take.
First, they probably used Taxol to test because it is the most commonly used drug in TN. They may have had the same findings if they tested any chemo drug commonly used in treating this disease.
Logically, not everyone must develop these cancer stem cells (CST) because we know that many people have treatment for this disease and go on to live long lives with no problem.
This may explain why a certain sub-category of us relapse. The one thing I've noticed on here is that the initial stage of diagnosis doesn't seem to have any impact on relapse. (We've seen people on here that have been Stage l or ll with no nodes relapse. *raises hand*).
This may explain the reason why SOME people relapse, no matter how early their stage is at diagnosis, and may represent a leap in how this disease should be treated. Sadly for all of us it is still at the animal testing stage. Hopefully it is a positive new direction for the future, and all of us have to keep fighting.
So please relax ladies. We all received what has helped the MOST people with this disease survive. After that, all we can do is hope and pray for the best. -
Kathyrnn, We appreciate you sending us the article, we have to know and be informed. Please do post in the future if you have anything to share, I am not upset by it at all, I would rather know.
I think I am relapsing right now (tears, tears, fear!!!!!). My back has been hurting, and the last few days, it has become unbearable. I can't think of any reason for the pain, except some small findings in my neck a few years back on an MRI. Just before I got diagnosed I had this same pain, and now it is back again. I have already convinced myself that it is that horrible thing come back in my bones.
All I have to do now is to get courage and go get a petscan. I recently had very low numbers on my tumor markers, all 3 of them and it was actually very recent, maybe three weeks ago. Could this really be a relapse? At lunchtime today, I went walking with tears flowing down my cheeks, all the memories come back about making decisions. Ladies, should I go to my Onco. and ask for a petscan? Is it that time? Should I do it? I have absolutely no one to talk to, not one single person in my life who can relate to what is going on. The people I have in my life are the kind who would smile and say to me, "you worry too much", it must be nothing.
I feel so alone. Maybe dying wouldn't be so bad, although I could use at least 5 more years to fulfill my dreams.
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Lovelyface, yes, call your oncologist. Sometimes I think it was easier once I knew than worrying and waiting. It could be nothing, but I no longer ignore anything my body is telling me. ((HUGS))
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I agree call the oncologist. I can say that 3 weeks ago I had lower back/pelvis pain and they did a bonescan and it was negative. They deemed it muscular. That helped me and calmed me down. I'm hoping it's something similar for you.
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Lovely, please do not panic!!!! Where is the pain and how long have you had it? As a veteran of chronic back problems, it takes something as simple as a sneeze or tying your shoes to aggravate a back injury.
It could be that you were unaware when you initially did something that injured your back, and the injury is gradually causing your pain to escalate now.
To see your primary and see if he see's some obvious symptoms such as muscle tightness and spasm. If he sees nothing, and it's then been over the 2 week rule, contact your oncologist. Also, don't give yourself a case of the Heebie-Jeebies because several of us have had recurrences. There are ton's of women with no recurrence who have left the thread because they're successfully moving on with a disease free life.
*big hug*
Kathy -
Thanks ladies, I called my oncologist and she quickly faxed me an oncology panel to do tonight. You know Kathyrnn, I have been wondering about this pain for years now, I think it first started in 2008/2009, and then I was diagnosed in 2010. During the treatments and afterwards, the pain had disappeared. It had come back for a month or two in Janury/February, 2012, but it had disappeared again. It is the most horrible pain and does not seem to be mascular. I have repeated my symptoms to doctor after doctor, lately I thought it was related to my thyroid. Just this afternoon I am realizing it is possibly coming from the back of my breasts towards the backbone....... this is my latest observation. It could be my neck where I have some deterioration of C5 or something. I did see a back doctor not too long ago, and he said my back looked just fine. This is almost like a burning and I feel I can't breathe when it comes, not only my hands but my legs feel weak too. One doctor had told me if it was coming from my neck, it shouldn't affect my legs. Another doctor had told me that it is possibly anxiety. The symptoms sound like anxiety, breathlessness, weak hands and legs, but the pain, what is that, and that is unbearable. I am not sure if I will ever be diagnosed for this thing, as I have no faith in any doctor out there who can diagnose this. I have seen way too many doctors and explained way too many times in 2008 and 2009. Since I was diagnosed in July 2010, I feel this is related to that ugly thing. I will keep you posted.
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Lovely:
Burning type pain is generally nerve pain. Sounds as though you may have a pinched nerve that triggers off from time to time. Could certainly be from a degenerative cervical disc. Have it checked for peace of mind certainly, but try not to panic (something I have yet to accomplish, I might add). Wishing you merely a pinched nerve....
Linda
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Lovely, I understand your fear, but we know our own bodies and know when there is something wrong. Hopefully it is just a minor problem like a pinched nerve that can resolve with antiinflamatory meds. Have it checked, but try to remain calm. And try not to think that because some of us have recurrences, that it's likely to happen to you. Chances are it won't.
I'm curious to know if skin sparing creates a better chance of recurrence happening. My PET showed some skin involvement prior to chemo, but looked completely clean afterward. ( I swore i had IBC, but surgeon insisted no). went with the bmx with te's, now the beast is back. How about everyone else...have you noticed any correlation between skin sparing recon and loco/regioal recurrence with those that you know? I guess they call it skin mets and chest wall mets.
I just finished my 2 weeks of xeloda with minor foot discomfort, not much more than mild nausea for an hour or two after taking my pills. now I'm on my week off. How long will it take before I know that its working, and how often are PET scans typically given?
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slowloris, sorry dear, I haven't read up on correlation between skin sparing and skin mets. I had a lumpectomy. I have only done 2 PET scans, once after surgery before chemo and once when my doctor "panicked" about my symptoms in 2011. So far only twice Glad to hear that xeloda wasn't too bad. I truly hope that you get a clean PET scan very soon. It may be given yearly or depending on symptoms.
For myself, my questions are, if my pain is related to a nerve pain, then why doesn't anti-inflamatory drugs help with the pain? If it is my neck, then why do I get pain also on the sides of my pelvis (maybe ovaries) and my legs are shaky. And if it is back pain, then why don't I have any pain at all right now, I could run a marathon, my back is very fine. I truly feel that this is not mascular.
I feel that when my estrogen level is very low, then I can feel my central nervous system and every single nerve hurts and when my estrogen level is normal, then there is no pain. Has anyone felt any correlation between low estrogen levels and disturbances in your body? My doc told me not to eat soy. I have researched on the internet many times what to do to bring the estrogen level up. I have taken flax seeds and they make my breasts hurt, maybe too much hormones. Not sure what we can do to balance this devil thing called hormones.
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Kathy don't blame yourself about sending us a link. Quite honestly I don't find any of them very good. It's all either doom and gloom or 'hey we've found a cure for TN's' or 'break through in TN breast cancer' but ones we never get to see or hear about again. i just wish they would all feck off with their rational's cause half of it is crap. Next month it wil be AC that is the bad guy or some other drug or food we have been taking/using. All we can do is keep our fingers crossed and hope for the best and if that doesn't help we could always have a tree through our roof for Christmas!!
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Annie, I agree with your feelings! The oncology surgeon very honestly told me that oncology isn't an exact science, it is basically guessing what might work. So for now we all just keep on fighting and praying for a cure.
Lori - I had a lumpectomy, so I don't have any info to help. The one person I remember who had a horrible time with skin mets was Inmate, but I checked her bio and she initially had a lumpectomy.
Lovely - no pain meds help with nerve pain. My herniated disc left me with chronic sciatic nerve pain. I can take anti-inflammatories and narcotics for the pain but they don't give very much pain relief. I do take gabapentin (Neurontin) which is an anti-convulsants which helps with neuropathic pain. There are days I want to gnaw my leg off!!! -
I also take Gabapentin for 3 herniated discs in my neck...not sure if they help or not...still have pain when I lay down but scared to stop in case it gets worse.
Does anyone here take Allopurinol for too much uremic acid? Just curious about any SEs.
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Cocker Spaniel,
Your post helped a lot. After reading that article my fears of recurrence/metastasis were reignited.
It's true that these small research studies, hopeful or scary, come and go like the wind. I forgot that! I guess if they stop giving taxol or taxotere to all newly diagnosed tnbcs then maybe I'll start worrying again.
Nonetheless, it was good to have the article to show my onc at our next meeting.
Peggy -
Kathy- I've had chronic sciatic nerve pain for years as well. It did get better during treatment, mainly because I was resting 80% of the time. Then I got the post chemo neuropathy. I saw a pain dr for years for injections, etc. What I am leading up to is this- I now wear a Butran patch which delivers a steady 5 or 10 mcg of hydrocodone (norco). I can now walk again after 2 yrs without feeling like I"m walking on glass with charred feet. I have no side effects, no sleepiness with the patch. I wish he had offered it a year ago, but apparently they have to go thru a protocol of treatments. (If they won't go straight to butrans, ask for a Lidocaine patch...helps too)
Also wanted to mention that I had like 9 MRIs to check for terrible aches and pains that I was sure was a recurrence. Probably a combination of fear and the poison leaving my system. Go ahead and have everything checked out because you have to have peace of mind, but know that you're probably OK
Hugs and love to those still in treatment
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Schatzi - my DH has taken allopurinol for at least two years. He hasn't complained of any SEs.
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Lauren, I am in the same boat as you. Had the chemo before surgery and rads, with no complete response. My tumor went from 6.2 down to 2.3.. So I keep an eye on symptoms. The difficult thing, I have lymphedema in that breast- lots of bumps and hard spots, so it's hard to do a self check.
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Hi ladies.
As you can see from my signature below, I am recuperating from surgery that was 2 weeks ago. I've been lucky post-surgery; just some discomfort the first few days. I feel very fortunate that my PS was able to save my nipples and put the silicone implant in right away. I am happy with the outcome (I call it my 'silver lining' in this yucky journey).
My onc appt yesterday made me realize that the hard work is about to begin. I had been feeling pretty good and admiring my 'foobs' recently, but the onc appt yesterday has put a cloud over my head today
. I have to decide whether to move forward with TAC (includes adriamycin) or TC (includes Taxotere). I know TAC is more toxic to the heart and can be a more bitter pill to swallow, so to speak. I am considering the Taxotere route. 6 rounds, 3 weeks apart. Any advice? -
LuvRVing..thanks for the info...weird thing...didn't have any gout symptoms (altho with Arthritis it's hard to tell) but my blood test showed the uric acid too high.
Have been on Allopurinol for 6 weeks and now my index finger is HUGE...with bony bumps as well. Thought it was kinda funny that it appeared after I started the meds. Have no idea how long my PCP is going to keep me on this. I assume until the blood test shows normal. Sure didn't need ANOTHER pill
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Doglover2013 - Do I understand that they are no longer giving both, TAC and TC? You have to pick one over the other? Really? Just my opinion on the Adriamycin, the red devil. My nurse had shown me the numbers at which it is toxic to the heart. The amount I received was no where near that number, so I was satisfied with what she had shown me in 2010. They didn't even want to send me for the EKG before the procedure, but I insisted and got that done. I don't have any heart issues after the treatment, it is all fine. Did you read the article which was posted by Kathyrnn recently? Please do read that before you make your final decision. I will try to find the link and post for you in a minute.
I am just coming back from seeing my Oncologist - she said my bloodwork does not suggest recurrence at all. She said everything is perfect, whatever pain or discomfort I have is not from a recurrence. She mentioned that maybe I should take effexor for hormonal issues or get myself checked out for other diseases. She told me to eat some estrogenic foods, but cautioned against it strongly - that even though this time it is TN, danger is it comes back estrogen positive. I am happy to know it is not BC, but not happy that I am suffering without any answers. Whatever it is, it is pointing towards some neurological type thing - sensitive central nervous system with pain, off and on, vision problems, memory problems, fatigue, weakness. I will work on this and am seeing a neurologist sometime in July. Thank you God for a good day today, didn't hear anything horrible. Onco. is convinced beyond dought that this is not pointing towards a recurrence and I am gonna take her word for it, this time.
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