Calling all TNs
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I read this thread but have not posted in awhile, but just had to offer the info above on icing. Since I've posted, just want to say that my heart goes out to you sweet ladies who are going through the diagnosis and early treatment stages. You are in my thoughts & prayers. To those of you who have recently gotten good news. Yay!! It goes without saying that each of us are there for our TN sisters, be it good news, or news for which we need support and prayers. To anyone out there just starting chemo, I'm one of the fortunate ones who did very well on chemo & rads. Feel free to PM me.
Having said that, I guess I'm one of those who doesn't want to put a scare out there. I might change my mind down the road, but for now, that's just me. Maybe putting it out on the thread just scares me more because it makes the possibility of bad news more real for me. (I had one (scare) back in April with a biopsy that turned out to be benign -- also posted after the fact.) I'd rather soldier through and post later - mostly to let other TN ladies know that scares often times turn out to be OK. So, if this helps anyone who develops a cough, here goes. I had a cough that sent me to my primary doc twice. First time, she said this sounds like the beginning of bronchitis, gave me Flonase & Z pack - didn't work, and cough still keeping me awake at night. Second visit, she said it was "inflammation" - gave me 5 days of Prednisone & Singular & told me to switch from my daily Claritin to Zyrtec (much stronger - who knew). When my cough went on to almost the 4 week mark, called my MO & spoke to her excellent PA who said I "absolutely needed a chest X-ray" (very standard). Chest X ray was completely normal - thank God! But still saw the PA cause cough had not completely gone away. She said my chest was clear, but that if I developed more serious symptoms (like shortness of breath) or if cough persisted for 2 more months, I would need a CT scan to make sure nothing was "hidden." Two days later, cough finally stopped - at the month mark. Sometimes a cough is just a cough. Yep, it was going around in my own family - cough that persisted for a month. But when we have a concrete symptom that could clearly mean trouble..... your face breaks out so badly from stress that you get the strongest acne otc product you can find which promptly causes you to get a red bumpy face for which you have to get a prescription from your derm to clear up. Yep, that's what happened to me-:). That damn stress!!!
When I was going through this, I found a relatively new thread titled "Scares that turned out to be nothing." It's excellent and Lago (not TN, but a very helpful BC sister) posted a list of symptoms on that thread that is not alarmist but very helpful. May this help someone.
Paula
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Kathy - Like others I've been thinking about you a ton and checking back here frequently for your updates. Your attitude and faith are such an inspiration. I hope you get some answers very soon and can start treatment asap. Many continued prayers, love and hugs to you! xo
Meadow - I had my ovaries removed after BRCA was positive yet I'm still monitored every 6 months for ovarian and primary peritoneal cancer. My risk for ovarian is now lower than the general population, but I think it's still around 1-2%...I can't quite remember. My risk for peritoneal is slightly higher, since the stomach lining is very similar to ovarian tissue.
Cocker - I was tested for the P53 gene. It was included in my BRCA plus panel.
Amy - great news about your sister! Hope you're starting to feel better from your last round!
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Ally my wife is also BRCA2 positive and had her ovaries removed. While I was aware of (and kinda confused by) the fact that the risk for ovarian didn't go all the way to zero after oophorectomy, I was unaware of the increased risk for peritoneal. That's what's good about these forums. Great source of info. Thank you for sharing that.
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Good news for all TN: it is NOT recurring TN. Mo said if it was it would be a fight. It is endometrial/ uterrine cancer. A month before my BC journey at this time last year I had a hysterecctomy and everything was removed.
I had the early stages of uterine cancer, hence the hysterectomy. Those cells were contained, we all thought. Well, a couple must have escaped. Ideally taxol family is best for me, but my body rejected it last time and they won't use again.
Friday at 8 a.m. back in the chair, starting carboplatin. No wait for port, looking into abraxene also.
I am blessed to have a treatment plan, and people praying. God and I got this!!!!!
DH much better also.
Hugs and love to all
Kath
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MomMom,
Gladit turned out well. Miss you at the northernVA lunches.
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Kath, prayers for minimal SE and very effective tx! Hugs xxx
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Kath I'm sorry you have to deal with this! I'm glad they at least have a plan and treating it ASAP though. I had Abraxane instead of Taxol after A/C because my Onc said Abraxane was easier on the system with less side effects. I can tell you for me it wasn't bad at all! They didn't even have to give me nausea meds before the treatments but I did request it and took Zofran the first couple days after but I didn't take them all day. Just once or twice. Please keep us in the loop. We are and always will be your family even thought this isn't BC recurrence!! I'm praying for you and will continue! XOXOXO!!!
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Kath, sending positive thoughts your way! So glad you have a plan and they're starting immediately.
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Kathy - so glad to hear you've gotten some answers and a treatment plan. And great that you can start blasting those cells so quickly. Prayers to you!
AL - I hope I didn't scare you or anyone else who has the gene. The risk for primary peritoneal is low. My MO doesn't think I need to be followed for it, but my gynecologic oncologist who did my BSO/hyst said he has seen it a few times in his practice in BRCA patients, so he prefers to monitor. I'd rather err on the side of caution as he suggested. I have a physical exam (which includes a vaginal and rectal exam to feel for hardness, changes, etc.) and also a CA125 check every 6 months.
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Kath, sending you hugs as you kick this.
Cocker and Ally, I thank you
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Kath,
I'm glad you have answers and are jumping right into a treatment...just wish it wasn't necessary - of course.
Everyone - this is a wonderful group of ladies. Full of great knowledge and support. Thank you!
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Ally and AL. You would think that being BRAC1 & 2 and having an oophorectomy thereby eliminating your risk of ovarian cancer would be sufficient but its galling to think you are still not completely in the clear anymore than we are who haven't had the surgery and it makes me cross to think why bother to have the surgery when you are not 100% safe. I think I would take the darn chance of keeping my fingers crossed as its probably about the same odds. Makes my blood boil that you Ally, Mrs AL and Kath do all that you can to help yourselves and there is no bloody guarantee. Cancer sux.
Also Ally I don't think you scared anyone. It's good that we are all aware of these things and can share them with each other.
Likewise you Kath, you had a hysterectomy to presumably eradicate uterine cancer but somehow cells escaped. Flaming cancer creeps in everywhere. So glad treatment has started quickly for you to start tackling this blasted cancer. In your pocket and not going anywhere.
Not a good day today. Took my old feller to see the surgeon to discuss surgery for his inguinal hernia. While we were there the surgeon said look to save you the drive up again (only an hour) I will phone and get you to go for the pre anaesthetic check whilst you are here, which he did. We got to the private hospital and the nurses starting doing the obs on him and then they did the ECG. I was looking at the tracing as it came out of the machine and thought "he's not in sinus rhythm" which is a normal heart rate. He was in atrial fibrillation which is a racing heart and carries a risk of stroke. He is unable to have the hernia operated on until his AF is controlled so its blood work, chest x-ray and medication to try and control it. On top of that, what he thought was two attacks of the flu because the cough hasn't gone and is keeping him awake at night despite all the cough remedies and it turned out to be pneumonia, so more meds for him.
So a bit of a shitty day really. Hopefully the sun will shine tomorrow and all will be right with my world. Have a good day ladies.
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Cocker, I'm so sorry you've had a miserable day. We need our furry family members when we're in the middle of this fight.
Kath, your emotional fortitude leaves me speechless. I'm sitting here just furious that you have to fight this when you've done MORE than your fair share in fighting and preventing it... but your acceptance and courage is mind-blowing. We are all in your corner and fighting for you, so please keep us posted with everything that comes of it. I've been praying for you continually since you shared the news, and that isn't going to change.
We have finally gotten a Tempurpedic bed, which we should have done eons ago. When it was finally delivered Tuesday (several days later than it should have been), the base was broken and we were told to refuse it. I normally handle snafus with calm and humor, but this was not the day for me. LOL Poor guys. I was so frustrated and disappointed that I was in tears while hubby was on the phone. I whispered, "We CAN'T refuse it because we have no bed to sleep on! I'm trying to get through this round of chemo and they've totally messed it up!!!!" Not my finest hour. So we've been sleeping on a mattress on the floor; the base will be delivered today. I was just holding on to this as the holy grail to help me get comfortable during the hideous days 4-6. Well, next time. And I know it's clearly not the worst problem we're dealing with, but it's just aggravating to be pinning your hopes and anticipation on something only to have it disintegrate.
But in better news, my sister's colorectal cancer was officially downgraded. T2N0M0!!!!! Because of the location (just near the anus), surgery is being avoided or the entire rectum must be removed. She is starting DD chemo with simultaneous radiation in 10 days. It'll be a pretty brutal six weeks for her plus the post-treatment recovery. I'm brokenhearted but also glad she isn't going through five months of chemo, then surgery, then radiation like I am. That said, it means that my parents are going to be pretty much unavailable to help me at all. There's no way my mom is leaving her during all this.
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Ally you absolutely didn't scare me. Like I said, I value the information. I know my wife went to the gyno onc who did her surgery for an exam about 6 months after the surgery and they looked at he like, "What are you doing here?", and told her she didn't need to come back unless she has some kind of symptoms.
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Cocker, so sorry you had a crappy day! I'll pray today is better for you!
Amy, I'm sorry about the whirlwind you've been in lately! You and your family are all in my prayers. Good news about your sister though! Hoping you have a better day. Sending you a big hug. It'll get better. Just hang in there
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My current treatment is 6 rounds of taxotere and cytoxan. Is anyone else having six rounds? My oncologist is going to see how I am doing after four rounds, but is presently planning on six. After I am thru with that I will have 30 days of rads with a 3 day boost? My Stage was 1A, grade 3 and I just had my second treatment on September 18th. Feeling light-headed so trying to stay hydrated. I lost most of my hair on day 13 so went in and had it shaved off.0
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Woke at 8.30am to banging on the front door. Staggered downstairs and told the Jehovah Witnesses to come back next year. Dogs were barking like mad so silenced them with a stern command that didn't wholly work (they always have to have the last bark) and told the birds to stop chirping as they were giving me a headache. The old feller was nowhere to be seen. Called him on his cell, he had got up, he's an early riser, showered, cooked himself bacon, eggs, sausages and tomatoes with toast, taken all his medication which I was surprised at as he normally tries to avoid them, gone down town got his blood tests done, had his chest x-ray and called in to see the doc who said his heart rate was a lot lower today. This I found unbelievable due to his breakfast of total cholesterol. But I'm pleased to say the sun is shining. Takes me at least an hour to fully open my eyes in the morning and even then its difficult.
Kath I agree with CarolinaAmy. I would never be as brave as you. I know you have your faith, as I do, but you seem to have a calmness about you that will carry you right the way through your treatment. We will all be with you and support you all the way and hopefully this will all go well. Sending big (((Hugs))).
CarolinaAmy it only takes one little thing when we are at our lowest and to find yourself with no bed is no little thing. I would have been jumping up and down and creating merry hell which would help no one. Hopefully it will all be sorted today because you will certainly need the proper sleep during chemo. So sorry to hear about your sister. What a lot she has to go through but although your mum won't be with you we will be and will be supporting you all the way. Big (((Hugs))) to you too.
Ally I love the way that we feel we can share information, good or bad, and be there for one another in, good or bad, times with supportive words and hugs.
I'm going to make my old feller a healthy salad for lunch today to soak up some of that cholesterol and then I might even make an effort to clean the house. Have a good day ladies and make sure you laugh at least once.
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I am your breast cancer sister as well as a Jehovah Witness.
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lovelifebr....I did the same thing at day 13, I hope you are comfortable with it. I loved being bald...I always had a mess of bed head every day all day...the smooth, no fuss days of no hair during chemo was liberating!
shorfi... sweet response, I am sure no offense was meant, hope none taken.
hugs to all
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Shorfi love the Jehovah witnesses and usually have a great conversation with them but just wish the ones here wouldn't call so early in the morning lol
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Cocker - so sorry for all your husband is going through right now. Glad to hear his heart rate is down and that he's taking he medications without too much gruff.
Hope things start to look up for you both soon. Amy - yay for the new bed, although a little frustrating how it all went down. And yay for more good news about your sister!
My husband and I are celebrating our 12 year wedding anniversary this Saturday with a last minute weekend getaway, I'm excited. I texted him at 2 pm today and said, "let's do this!" and had everything booked in an hour. Prior to being diagnosed we didn't celebrate b-days, anniversaries, etc., but now I feel so differently. I want to make good memories and recognize every milestone. We're just going a few hours up north (Northern Michigan), but it will be nice to get out of town and take in a change of scenery.
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Ally will have to say happy anniversary now as I'm not sure of your time zones for Saturday. Every good memory is something great to remember and share with your husband and even getting away for a short time recharges your batteries so make the most of it and enjoy. I used to dread birthdays but now I love them!!!
Shorfi no offence was meant to the Jehovah Witnesses but they do come early here in the morning and they know this and we have a laugh about it because I am normally in my dressing gown or half dressed but they never seem to mind that. I recognise they have a job to do and I'm quite happy to listen to them over a cup of tea or coffee.
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Hi again everyone. Just wanted to stop in and thank everyone for the kind words and encouragement. I will definitely talk to the oncologist about doing weekly Taxol instead of dose dense to prevent neuropathy. Great advice!
I had my first AC this morning and have been battling nausea since about 3pm! I thought I'd have more time! My doc did warn me that the nausea tends to be more severe in younger women, although they still don't know why. Guess that's why. I tried to sleep it off with a nap before the kids got home, but I kept waking up from awful nightmares in a pool of sweat. I'm blaming the steroids! Now I'm laying in bed with the equivalent of morning sickness, willing myself to fall asleep. I want sleep!!!!
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aggiemegs so sorry you are battling nausea. That was one of my main worries with chemo but luckily I didn't get any. My oncologist gave me EMEND and it was a wonder drug for sickness. Maybe you could call in and ask for this to help you. Nothing worse than feeling sick and knowing you look it as well. I had Taxol weekly and it did affect my fingers but hopefully you won't get it. Good luck with the rest of your treatment and will be in your pocket with warm hugs.
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Cocker - thanks! I did take Emend prior to treatment, and have been taking Compazine every 6 hours too. It's manageable nausea, very much like morning sickness, but it sucks still.
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Wow Cocker your husband must be super quiet in the morning! When my husband is up there's no sleeping thru it! He thinks everyone should be up if he is! Grrrr!
Ally, hope you have a great getaway! Happy Anniversary!!
Aggiemegs, what meds are you taking? I was prescribed Zofran and Compazine for nausea, and Ativan to take at bedtime to help me sleep. All worked well for me. Hoping you feel better tonight! HUGS!!
Teka that's a cute pic!!
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aggie: i had bad nausea during AC. I needed anti nausea drugs injected into me daily twice, since i couldnt stand the smell of the tablet even.
do ask for anti nausea injections if possible.
cocker: looks like u had a rough day. hope things are more settled now.
i am waiting for the results for genetic testing. I read about the TP53 gene in particular everyday. I have this strong suspicion that i may have it else what on earth could have caused cancer to a healthy, non smoker, non drinker, junk food avoider and fitness freak like me... This damn gene will also put me and my 7 year old under strict cancer screening ...
Do we know of anybody who has brca and tp53 harmful mutations and yet never got cancer till old age.. ??!!!!
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BanR, my family is BRCA 2+. It seems to skip generations. My maternal grandmother passed away from ovarian cancer. Her sister has breast cancer. My mom, aunt and 2 uncles (maternal grandmother's children) are fine. Healthy with the normal health things that come with age. Along comes me, eat well, exercise and BAM! Breast cancer. Who knows... life is finicky!
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Luv - I have Emend, Compazine, and Dexamethasone that are all supposed to help with nausea. I have a prescription for Xanax for anxiety, but it's not doing much for me. I am thinking I will ask for Ativan instead when I go in for my Neulasta injection today. Clearly I need all the help I can get! I had a couple Ativan left that my BS prescribed for before my MRI. I took one before bed last night and slept like a rock, and woke up feeling great! Of course, within about 30 minutes, I needed to start popping pills to knock out the fastly approaching nausea. Hoping for a decent day today
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Aggie Zofran seemed to work better than Compazine for my wife. Just in case you may want to mention it to your doctor.
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