Calling all TNs
Comments
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BAK94 I am so pleased you have at last found the reason for your back pain and that you are feeling better. You have had that pain for too long. So glad you have now got some relief. Glad the Gabarpentin is helping and so, so, glad you have new doc. This human also loves that dog. Romi is gorgeous. Can just see the chicken cuddled up for warmth to Romi, what a picture it would have made. I inadvertently left the garden gate open today while I turned on the watering system for the garden and Chloe rushed right out to see the little girls across the road. She didn't even bother to look left, right and left again lol. If she had been hit by a car it would have been no fault at all of the driver.
Jan NED or complete response, who cares as long as you got it. So glad you are doing great girl. Yep time we got back onto those quilts or reading that good book. Do you read Sarah Donati or Leslie Pearce. I have just finished a series of both of those authors that were excellent stories. They are a series of three books each based on a family and you read from the beginning of the family to the end and all they go through. Very good.
Mikesgirl17 I agree with stupid statistics. Listen to your body, if you are feeling well, eating a little bit of everything in moderation, sleeping well, exercising, and have no pain why would you want to spend all that time on the computer looking up statistics when you could be "living". They are of no help to anybody and do nothing but put the fear of God up newbies. Go to your docs, onco's, BS's, they are the ones that can help you with your questions and fears, not out-of-date stupid statistics. I don't even read those posts anymore.
Titan long time no post girl. Are you doing the Ironman over here next month. Your room is ready.
Hi Linda hope you and those gorgeous girls of yours are well and happy.
Jenjen great news about your wee man turning 4. Hope he had a great day. Make the most of those days because they are gone in a flash.
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megomendy,
I had the same problem in December, we moved my weds treatments to Friday. My NP OC told me I couldn't receive the shot before 24 hours, so each time I finished chemo we would set the beyond that time the following day. However she said it was perfectly fine to do it Monday. She said the ideal window is 24.01 - 72 hours after chemo. You will be fine.
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Meg, I had all of my chemos on Fridays and got my shot every Monday morning first thing - had no problems! I had heard on the boards of some women giving themselves the shots at home.
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inspiredbydoice, bluebird144, and others. Tu for the references, thoughts and opinions. My onc rad explained the reason for the trial as follows :
The standard of care for my situation used to be (some still use it depending on the circumstances),
Surgery,chemo,rads
If you had zero node involvement pre surgery, didn't need rads.
THEN they found chemo, surgery, than rads worked better because they could see what the chemo did, by postponing the surgery, and in some cases do a lumpectomy in lieu of mstctmy.
He said the challenge they have now is if chemo gives clear margins then why not follow the recommendation of rads as you would if the person had no node involvement pre chemo.
This makes sense,and I hadn't thought about keeping some of my arsenal for later. I'm close to making my decision, but will continue to monitor the site. I'm off to read the links u sent.
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Megomendy, my insurance would not pay for the shot to be administered at the center so they shipped it to my home and I administered the shot each time. never a problem it was there in plenty of time. I am diabetic so it is no problem for me, but it is not hard anyway. Just an idea.
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Annie...I'm here..just reading all the posts....been super busy! would love to come to NZ to see you...we would have so much fun....
agree with you all in googling TN....I was so naive 5 years ago when I was diagnosed. I didn't know much about bc let alone the different kinds....I only google tn when I want to freak myself out...which is NEVER! don't do it...lol
I'm glad you like this thread...I was reaching out to others in a time of need and found you all.
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Hey everybody..
I had my 8th infusion a few days ago and post that, have been reading all your posts. Was terribly tired to type back but its go good to hear from all of you.. we don't know each other face to face, yet it seems like a big family to me!! BTW, it was my last chemo, but I prefer not calling it my last...I really don't want to challenge fate!
I am getting mixed feelings, now that all my 8 chemos are over. When the first one began in Nov it seemed like a long long journey but somehow ACs and Taxols, flew! A little scared too, since now I know killer chemo will not be around and my body's immune system has to be on its own to deal with malignancies, if any.
Now the turn for radiations have come. Could you please advise me which radiation procedure to opt for... just begun my research...IMRT, IGRT, Gamma Knife etc.
Thanks in advance!!
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Thanks for the info on the neulasta. Funny, how that is my big worry right now. I think there's a lot more to worry about. I'm sure my husband will be able to give me the Neulasta at home, if needed.
I was scheduled to get my port in Tuesday, but the doctor's office called me and said that one of my labs was high, something regarding clotting, and the interventional radiologist was concerned about putting in the port. They are repeating the blood test and putting the port insertion off a few days. But the MO office said, well she just had a lumpectomy and had no trouble with bleeding/clotting then! I guess nothing goes smoothly, huh? Has anyone gotten the port put in w/o the "twilight anesthesia"? Just with the local? I read something in another forum where the woman declined the twilight and felt fine after?
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Hello to all you lovely ladies!
Meg- my facility also gave me the shots to take home and give them to myself.
Bak- I'm on 1800 mg of Gabapentin for the nerve pain after the surgery for a herniated disc didn't work. I'm having no problems. My doctor warned me that it can cause memory impairment. I don't know whether to blame the drug or chemo brain.
Well ladies I'm off for some fun today ladies. (No Cocker and Titan....I'm not heading to the casino). I decided that each time I finished chemo I would do something on my bucket list to celebrate. Last time was a Trapeze swing. ( there are probably still some traumatized children out there. You had to see the looks on their faces when they turned around to see an old, fat, bald woman standing in line behind them!!!)
Today I'm taking my friend Carol (been friends since college) with me to go wind surfing. For those not familiar with it, it's a wind tunnel that simulates the experience of a parachute jump. You are able to fly in the air like you would during a jump. Now I wonder how many people I will horrify this time. I'm not bald this time.......but I have to take my false teeth out!!!! It's gonna be ugly ladies, but my highly developed sense of humor just doesn't give a shit anymore. Today I'm going to celebrate that I'm alive (and still kicking for an old woman) and make another precious memory with my dear friend.
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Kathy - I love the visuals you gave us! Too funny
I say go for it and enjoy every second! Be sure to share your experience with us.BanR - I think most of us had mixed emotions about finishing chemo tx. You may soon find that rads give you a continued sense of kicking cancer's a$$ and the time will pass quickly. After rads were done, I worried about whether we'd done enough to kill every cell. My MO wasn't in favor of either CT or PET scans because he thought the anxiety factor outweighed the benefits of the scans. I countered with how stressful it was not knowing whether I was NED and that tx was successful. He ended up agreeing to a scan!
I think it's normal to feel like you've been pushed out of the nest when you're not sure you're ready to fly solo.
Good luck as you go through rads - they are definitely doable!
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24,000 posts - wooohooo Titan!
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I say make as many memories as you can! Sounds like fun!
As far as the Neulasta shot, I'll just throw this out there. I work at a University that has a mycologist(mushroom PhD) and I know of many studies showing how mushrooms have special beneficial properties. I did some research into medicinal mushrooms regarding breast cancer and stimulating the immune system and decided to take Maitake and Turkey Tail mushroom capsules that are organically grown in Oregon by Paul Stamet. (Fungi Perfecti) Within a week after starting the capsules, I never had to have another Neulasta shot. My WBC and blood counts remained perfect all through 6 months of chemo. I credit the mushroom capsules for that. I hated those damn Neulasta shots. Claritin is supposed to help but I had a lot of bone pain even with the Claritin.
I had to stop the mushroom capsules before surgery. Interestingly, my rbc count and hemoglobin dropped during the time I stopped. They even tried an iron infusion but I was allergic to it. As soon as I had surgery and started my mushroom pills, my blood counts were fine the next time I was tested.
I would recommend that you talk to your oncologist about it. But also remember that most medical doctors will give you the frowny face if you bring up any "alternative" treatments. But as far as I'm concerned, taking mushroom capsules is no different than eating mushrooms. There are lots of studies out there regarding them.
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I just read a story where this dog with cancer is in a mushroom trial. Given only 1-2 months to live (rare type of cancer) they have been giving him some type of mushrooms, and he is doing great, excellent quality of life, etc.
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BLuebird, that mushroom post is very interesting. Can you attach a link to the ones you buy?
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Kath - every post you put on makes me LMAO. You are a fun filled lady but I feel so sorry for Carol. Make sure your parachute opens and keep away from the kids. AND don't put your teeth in your pocket!!!
Titan - we have the Round the Lake Relay going on this weekend and I feel so sorry for them cause it's so darn hot. Lake Taupo is roughly the size of Singapore so that's a lot of Relay!. Could just see you doing the Ironman. That is the first Saturday in March every year so you still have time!! Plus I'm working on my new flag. It's a combination of Ohio and Lake Taupo, very effective. We have lots of sporting fixtures going on here and 80% of the residents come out to support the athletes from all around the world, it's a great atmosphere. So get those thighs flapping girly cause I'm waiting. Then when you have recovered we'll just nip up to the casino. We have clubs with pokie machines and competitions here in Taupo but the real money is Wellington, Hamilton and Auckland casinos. You can bring Kath if you like, if she can disentangle herself from the Statue of Liberty lol.
Journey - my goodness 24,000 posts. What an achievement for our Titan. Without her we would never have had so much helpful advice, fun and laughter.
Have a good day ladies. It's a gorgeous day here so I'm going out to get some vitamin D.
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Ban - nobody here is going to "recommend" a type of radiation that you should choose. I honestly don't even think there is a choice of type. It is whatever is appropriate to your situation. Listen to what your RO has to tell you. FYI - I think gamma knife is for people with brain mets for example. I've never heard of a lower stage getting gamma knife.
Bak - glad to hear you're feeling better.
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I keep forgetting who asked us about Evista and TNBC. My question is, are you going on it for Osteoporosis? If so, it sounds like you might be getting an extra benefit! This drug sounds promising in the treatment of TNBC. Here is a link to the article that Patricia Prijatel posted on her blog. If you aren't familiar with her, she is a TNBC survivor, has authored a book and updates her blog regularly with new information. She also has great nutrition and other helpful information on there as well.
http://hormonenegative.blogspot.com/ "Osteoporosis Drug May Treat TNBC"
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Gillyone - you are quite right gamma knife is only for brain mets, nothing else. As for types of radiation there is only the one that everyone gets, no other type. The only difference is the length of your treatment, ie 3 weeks of rads everyday, 5 weeks everyday etc.
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ok...Ban...your question about rads got me thinking...what kind of rads did I have..I knew it wasn't gamma knife.....so anyway I google rads for early stage cancer...and there is external and internal....you will probably have external...or maybe the internal...isn't that when the radiation is placed inside the breast in the form of pods or something like that? Anyway...external rads are directed to the whole affected breast...probably around 25 or so of those...then you will have what they call boosts...7 or so of those which are directed to the tumor site....at least that's what I had...good luck with your rads..personally I thought they were a piece of cake after chemo. a little freaky with the tattoos and the huge room with the huge machine in it but really it only takes a minute or two and you are OUT OF THERE....never felt a thing..no needles...no drugs to make you feel like crap....no nausea....maybe a little tired but it was a good tired..if you know what I mean...just try to sleep alot and keep the moisturizing cream with you...I remember Aquaphor....go braless...wear loose fitting shirts...I had to giggle going braless at work...no one even noticed...lol
Annie..you are tempting me with those casinos!
Dang Kathy..you are having fun...but I still think you need a casino trip..your mom will never know....oops..yeah she will...they know all dang it.
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Thanks Gilly, Titan, Cocker n Journey!
Have read that book - surviving triple negative ..when i got diagnosed a few months ago. Wonderfully written.
Now some tumors have "Lymphocytic Infiltrate" ...I guess if we check our pathology reports we can get to know.
For such tumors vaccines which boost the immune system should work well. It seems, for women who have a good amount of Lymphocytic Infiltrate in their original tumors, they have a lower risk of getting it again in the form of metastasis.
but why do some women have tumor lymphocytic infiltrate and some women donot is a question.
i guess all of you whose pathology report says dense lymphocytic infiltrate/ lymphopasmocytic infiltrate, should consider this a good sign.
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A quick pass through this thread tonight.
I was on Evista for many years (maybe 10 or 15 years) before my DX and then all through TXs. Still got the dreaded phone call......you have breast cancer.
Jan
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Titan here in NZ internal radiation has never been given for breast cancer only for cervical cancer. It was tried at one time for ovarian cancer but was deemed not to work.
Ban Yep Titan's right rads are a piece of cake compared to chemo. Never had any side effects whatsoever from it, neither did I have tiredness.
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There is also a controlled trial on a new thin transparent silicone dressing which is applied on the skin from the first day of rads which prevents skin reactions from rads. The dressings are free of chemicals, do not stick to the skin and allows stem cells of the skin to heal from any radiation damage. This is great news for anyone with my skin because I am allergic to latex and if I was to burn there would be very little to help in the way of dressings.
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http://www.fungi.com/product-detail/product/host-d...
http://www.fungi.com/product-detail/product/host-d...
I am all ways interested in anything from Oregon…it is my summer home. I will do some more research on this. Oregonians are interesting folk
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Looking for advice. I'm 3 wks post rads. I still have my port in. I was going to have it taken out after I healed from rads. Our local hospital is having a biggest loser type competition and I was chosen to participate. They had 100 applications and chose 8 contestants. I'm quite overweight and I'm really excited. I will have access to their dietician and personal trainer. Competition starts March 6th & now I'm wondering about my port. Will it interfere with my exercise? It doesn't bother me at all. Should I have it out now? Should I wait until after competition? Is there much healing time after removal? Will having it taken out interfere with my exercise/competition? Any thoughts or insight welcome!
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Wow, that's sounds like fun, as well as being productive, Lana!
I still have my port in, since Oct 2012, and it hasn't caused any problem with my exercising; I do high-impact aerobics, dancercise, free weights, and have done them for most of my adult life. I had spoken with my doctor a while back asking about when to remove my port; he said whenever I want. I am so afraid of needing chemo again that I have delayed and delayed, but I told him I would do it next month -- and now I am kind of backing out.
But I expect it to be less difficult than having one put in, so I plan a day or two of caution when exercising.Good luck, Lana! I hope you have fun and reach your goals.
Carol
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Encyclias having your port out is a breeze. I wanted to keep mine like you in case it was needed again but I didn't feel a thing. Just two small injections, one stung just a little, and it was out in a flash. Kept a dressing on for two days and that was it.
Lana congratulations on being a contestant on the Biggest Loser Competition. My manager did that a couple of years ago through the local radio station and it was great for all of us to cheer all the ladies on to lose weight. She came second which was great.
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Ban - I consulted with two tumor boards to help guide me in the decision.
John Hopkins Breast Cancer Center has a free question-and-answer service, and they provide answers to a wide range of topics from symptoms of breast cancer, to breast cancer diagnosis, question about breast cancer risk, mastectomy, radiation and many other topics. Ask An Expert: John Hopkins Breast Cancer: http://www.hopkinsbreastcenter.org/services/ask_ex...
I'm also attaching an article from the Cancer Society that summarizes a study which compared two types of radiation therapy: a type of brachytherapy vs whole breast irradiation.
"Study Compares Different Types of Radiation for Breast Cancer"
http://www.cancer.org/cancer/news/study-compares-d...
I hope this information is helpful for you!
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Lana - Congratulations! You must be so excited.
Well ladies I'm still alive and well. The only casualty was some chunks of hair. (No fair doing that to the chemo lady with very thin hair!). For some reason my hair tangled into the helmet liner and I lost a few chunks (didn't happen to anyone else, lol. Took it as a sign of God's sense of humor). It was the bomb ladies! The instructor told us after that he assumed because of our age, that we might need more help than the younger flyers. He was very surprised when it was Carol and I that flew like birds with very little assistance. (Us old people listen to instructions). The best part was the end of the second flight. The instructor asks you before you go in if you want to attempt this. When he asked me I told him "you bet your ass I want to!" They ramp up the wind speed and the instructor helps you go into a spin and you shoot up and down in the tunnel. We both had a phenomenal time! The only warning I would give is that it's tough on the shoulders. My left one is not happy with me today!
Titan - she has spidey senses.....she'd know I was off at the casino.
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Jianchi and Bluebird:
Here is some more
information on Evista.If you are just
starting your TNBC research in general, you'll start to come across articles
referencing EGFR ... it has been discovered that a large portion of TNBC tumors
have an over expression of EGFR, but there is some debate on what to set the
standard assay levels at. If there is a way to find out your EGFR level that
might be helpful as well, and then you can ask your doctor if Evsita works best
on those with a higher EGFR.http://www.ncbi.nlm.nih.gov/pubmed/23842642 “Raloxifene
reduces triple-negative breast cancer tumor growth and decreases EGFR
expression”http://cancerres.aacrjournals.org/cgi/content/meet...(this study is not about a
specific treatment, but summarizes the prognosis of those patients who have
over expression of the EGFR and its association with prognosis)https://theoncologist.alphamedpress.org/content/16... "For example, as already described, there is still no
agreement on standard assay or expression levels for epidermal growth factor
receptor (EGFR)."0
