Calling all TNs
Comments
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I just came home, (Thursday), from my 3rd infusion.......... I had an immediate bad reaction and my onco said I am finished with chemo. I am a little worried if I had enough chemo, but also happy no more!!!!! Will see her in 3 weeks and wondering what is next? Anyone had an experience like this? Also, ladies with loss of toe nails....I have been using shellac on my toes and finger nails. They look fine so far.
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Netter - sorry about your bad reaction. Will you be doing radiation?
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Netter...I also had to stop my 4th DD AC after getting blood clots in my lungs. I continued with 12 weekly Taxols instead of the 4 DD Taxols. They were rather uneventful but I continued to give myself a shot of blood thinners daily for 6 months. I was concerned about the one missing dose but I had no choice. I had 16 rads after the chemo as well.
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As far as I know I will be getting 6 weeks of radiation. I understand that is all that can be done for TN?
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Netter - I was once told by a naturopathic oncologist that some chemotherapy is better than none at all - if your body was complaining about chemo then not doing any more makes sense. After all - it is all about making you well - not ill. I did have a reaction to Taxol and had to have it given very slowly for the remaining infusions. I also had my dosage reduced with AC and with Taxol because I didn't want lingering side effects. Trust your body!! Perhaps your onc will come up with a different drug for you try. Keep us posted. Hope you are feeling better soon. What kind of symptoms did you have during the reaction?
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Hi Everyone,
I was dx with TN in late May. My name is Jami and i am 27 years old. I am married with 2 young girls (7 & 3).
I went to a mud run in April, injured myself, developed a lump and thats the beginnings of my breast cancer story. I did the genetic testing to find out i am BRCA 1 positive. No shock to me though because i have a family history of breast and ovarian cancer. However, it was a shock to me to actually get breast cancer this young. Which no matter your age, i know that nobody ever wants to hear the words "you have cancer".
Anyhow, glad there are other ladies out there that can relate to me with the same type i have. I haven't been able to do much reading on this thread yet but i am going to try so that i don't ask too many questions that you all have already answered.0 -
Adagio,
As soon as the taxotere started, my throat got tight, face got hot, lower back hurt and blood pressure went to 80/50. It was immediate. My nurse shut it down right away.
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Jami- really haven't posted on this thread for awhile but come back to visit. You have really touched me.. I was 37 with a 15 year old girl and I thought that was young. I hope you have family and a good support group for you. I have been canacer free for 3yrs. So you can do this it may seem impossible at first or during certain times but it can be done. I wish I could do more for you or have magic words to make it all better or for it to go away but instead if you have any questions please pm me and I will be happy to talk with you. There are so many wonderful women on these boards you have come to a good place. Take care.
Kelli0 -
Hi Kelli,
Thank you, yeah I am very fortunate, ( in a oxymoron kind of way, lol) to have a great support group. All of my family and friends have been great through this with me. I don't know where I would be without them. However, it's still hard to talk to some about exactly what I am going through so that's why I signed onto this site.
I hate to hear that you also had to go through all this. This has got to be the best place I have found for info and just be able to talk to other ladies who are going/gone through what I am. All the roller coaster emotions i have felt in the last (almost) 60 days is crazy! But I am doing good right now. Feeling good and just trying to stay positive!0 -
Jami - I'm sorry you've had to join us but please know that we will be happy to help. As an old woman, it breaks my heart to see someone so young join us. Yes, you're right, no one wants to hear they have cancer.. but it seems especially unfair when I see someone your age have to join us.
Please don't hesitate to ask questions. It doesn't matter if the question may have been asked before. This is a long thread, and you don't need to read the whole thing to get the help you need. Ask away, and one of us will do our best to answer.0 -
Thank you Kathy. Yeah everyone took it really hard when they found out. Especially my husband. And it hurt me to watch him hurt so bad. He is dealing with it a lot better now and has become my rock!
My questions are mainly about tips on treatments and best ways to get through them. I have already been given some great tips for the ladies on the Starting chemo July 2013 thread" but I just want to make sure there's nothing I am missing. At the moment I am worried about the potential nail loss... I don't know why but that scares me. I have already come to terms with loosing my hair. It hasn't happened yet but should start happening soon. I bought some hats and am considering a wig.
I hope everyone is doing well.0 -
Sweatheart- Ive lost a thumbnail and a toenail and I didnt feel a thing. It was just the top few layers of the nail so underneath was new growth, doesnt hurt at all.
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SweetheartinTX, I am about as old as you (28) and started chemo in May. I had 4xAdriamycin and Cytoxan dose dense every 2 weeks followed by 4xTaxol. I have 2 more Taxol tratments to go. Are you having TAC every 3 weeks?
I think being younger and active makes going through chemo a little easier. I started loosing my hair about 15 days after my first AC treatment and my period has stopped after 5 treatments (hope it comes back afterwards...). I have done 6 treatments so far and I still have some hair on my head (I look like baby) and I do still have my eyebrows and lashes (althoug thinning and not growing anymore). No problems with neuropathy and nail loss so far - but my big toe nails feel strange and my nails have stripes (one for each chemo cycle). I could always get back to almost normal (with less endurance though) by the second week after treatment but wit ha downward trend.
Are you having/getting a port? I decided not to and so far it works fine also just using one arm.
Let me know if you have more questions!0 -
Hi Jami.....So sorry to hear about your situation. I was diagnosed in April just after my 38th birthday. Its been difficult but it does get better and easier as the days go by. I have a 4 year old daughter and I have to be strong for her. I had a mastectomy and I am doing chemo now. I have finished 5 weeks of Taxol and it hasn't been to bad. You have youth on your side and with the support of family and friends you will make it.
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Sweetpickly- Thank you. Makes me feel a little better knowing that it isn't painful.
Argynnis- Yes i did get a port, they put it on my left side under my collarbone. I got my first infusion on July 10th. So i am roughtly 12 days post chemo. I haven't started loosing my hair yet but i know its coming. I bought a few caps and things. Glad to hear that i may not loose all my nails. That makes me feel better.
For chemo i am getting A/C X 4 every 3 weeks and then they will give me Taxotere X 4 every 3 weeks. I should be done in December.
My SE mainly have been nausea, headaches and heartburn. I got a rash but i believe that's from Colace. And i broke out with pimples from steriods. (i think) And i had some heart palpatations so my onc is sending me to a cardiologist. But after doing some research, it may be cause i am anemic.
Again thanks for the info and i hope we can stay in contact.0 -
Una2008- Thank you. I hate that you are going through this also. Why do any of us have to? I am a firm believer that everything happens for a reason though. Maybe its us because we a strong enough to handle it.
I am glad you are handling the chemo well.
((Hugs from TX))0 -
Hey Jami...we gonna make it....we have good reasons to live. We just have to stay strong and don't feed the cancer with fear. Thanks for the hugs. I am in Texas too. Houston to be exact
By the way, it gets messy when the hair starts to fall off. I thought it would be traumatic but it wasn't too bad. I cut it real short after my second Taxol. I've been playing around with different kinds of head coverings. My daughter and I are having some fun with that. I was afraid that she would not be able to handle my hair loss, so we had a chat about it. She told me, "mom I loved you when you had long hair, then when you had no hair and I still love you when you have no hair". I cried, but not because I was sad.0 -
Una - your daughter is precious!
Ladies - here is are a few tips you need.
At some point in your treatment you may receive Neulasta or Nepogen (?sp) to increase your white blood cell count. This drug causes severe bone pain in many people. There is no research on why this works, but many MO's recommended this to women on here. The combo is Claritan (the one without the decongestant), Zantac and a pain reliever. (I'm not sure if it was Tylenol, Ibuprofen or Asprin. One of the other Sisters will see this and let you know which one). There we different recommendations on when exactly to take it. I took it the day before the Neulasta, and then four days after. I had NO bone pain, and that's pretty amazing for an Old Woman!
If you feel queasy eat something small like a couple crackers. When I read that tip on here. I thought it was nuts, but it really does work.
I'm not one to drink a lot of fluids, but during chemo the advice from everyone is to drink, drink and then drink some more (I was told a minimum of 96 ounces per day). During chemo I would brew green tea and ginger and put it into gallon containers. The day before chemo and for 3 days after, I made sure the container was empty by the end of the day.
I also want you to know that how chemo affects everyone is different. I was 57 when I had my first chemo (12 Taxol, 4 AC). My side effects were minimal. I got queasy a few times but never vomited. Two weeks after my last chemo I celebrated by doing a Trapeze Swing. This is definitely doable ladies.0 -
Una- Really wow! I am getting my treatments done in Houston!! Awesome we are so close. And i agree, your daughter is precious.
And yes yes, we are going to make it!!! Somedays may be an hour at a time, but i am determined to be added to 2013 Survivors
Thank you for all the tips Kathy!0 -
Welcome to the newest members of the tn family. You may also want to join at www.tnbcfoundation.org. Lots of great ifo there as well.
My two year ck up with onc is Tuesday. Thise time she did bloodwork but no scans unless numbers are elevated. Carring you all with me in my pocket!
Maggie0 -
Thanks guys...my daughter is a handful but she really makes my day with some of the things she says to me. I am so sorry that I have to put her through this at such an early age but maybe someday she can make a difference. Hey Jami, we are like neighbors
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I don't think we are to take any aspirin at all during treatments...I think it is ibuprofen....the aspirin because of possible bleeding...I did take 2 aspirin during chemo cause I had a headache..and I got very queasy...didn't take it again.
Welcome to our new Texans! My aunt lives in Houston...one of my friends just moved to Midland... I know, I know that Texas is huge..its not like you are going to know them or anything....
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Yeah, my onc advised against aspirin during chemo - but I think it was because of avoiding additional stress on the liver.
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I took Claritin and Advil- really worked!
Been thinking about Luv (Michelle) and hope she is doing better! She is one hell of a lady and I hate to hear she is having a hard time.
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I have yet to catch up with the last 3 pages of posts, but when I read Titan's
post about her BC anniversary being July 20, I just had to write this. Titan, my anniversary is also July 20. Isn't that something? You finished 4 years on July 20, I finished 3. July 20, 2010 is the day I got diagnosed. Is that your diagnosis anniversary or surgery or finish of treatments?0 -
I don't know if this link will work but here is an article about chilled caps used during chemo which may eventually prevent hair loss. http://www.cbsnews.com/8301-204_162-57594881/testing-underway-for-cooling-caps-that-prevent-hair-loss-during-chemotherapy/ As some of you know, chilled gloves and boots are used during some chemo treatments to prevent finger- and toe-nails from discolouring and/or falling off - so this makes sense. They just have to be sure that it doesn't prevent the chemo from working, etc.
Doreen
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I didn't have the protein needed for the immunotherapy trial
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Poopadoo obxk. Love and kisses
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InspiredBy - Add an apple and a pinchof cinnamon to your carrott juice next time but be sure to remove the seeds. It's very tasty and I think you'll enjoy drinking it.
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Hi All. During my chemo, I started producing excessive tears which caused my eyes to drain constantly resulting in a constant runny nose. I went to an ophthalmologist who said my tears had thinned and they were no longer coating my eyes well. This made my eyes dry which in turn caused the excessive tearing. To keep the tears in my eyes to keep them lubricated, he placed tear duct plugs in my lower tear ducts. He said my eyes would more than likely correct themselves in the months following the completion of chemo. Well, here I am 1 year and 5 months later and I still have the plugs and my eyes are still terribly dry and I’m still constantly sniffing due to my runny nose. My eyes feel like sandpaper in the morning. It’s terrible. Did anyone else experience this and if so, did it get better?
Thanks!
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