Who is starting chemo in September 2016?
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One compensation, I only have the expense for caps vs. what I used to spend for cut & color with my stylist. I went in twice while I was hoping things would grow out, and it was just mortifying especially the second time. Broke down in tears after making the mistake of looking at it in a mirror before I left home. (It looks half-decent from the front, but if I look at the sides and especially the back, there's no mistaking it's wrecked.)
Maybe there will be some hair science miracle, but I've been slowly reconciling that it's probably not going to be good enough for me to go out without covering up for years if ever.
I had a Dexa scan last week, that came back good so no consequences from the years on tamoxifen and now Arimidex.
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Hi Everybody!
Just had my quarterly visit with my medical oncologist. It's been two years since my last chemo treatment and now I only have to see him every six months and my surgical oncologist and mammogram once a year. Life is finally getting back to normal.
I hope you are all doing well,
Sharon
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So far, so good for me. Glad to hear you are doing well!
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hi ladies
Happy 2019! I’m getting my monthly zoladex shots but planning to remove my ovaries in March. Can’t stand going into the clinic every month - plus, the injections are painful and expensive. Hope you all are doing great!
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Happy 2019 smilethrupain, nice to see your update. Best wishes for your surgery and getting away from the pesky injections.
I've been holding on, no new episodes thankfully to this point. Decided with one of my doctors to do an annual screening MRI alternate with the annual mammogram to get another view and a more frequent scan. Doing the MRI next week, hoping for boring boring boring results.
I did the Nerlynx drug over 2018 for HER2+ risk reduction after my TCHP with the year of Herceptin. I tolerated the Nerlynx reasonably well but will be very happy to be done with it in the very near future. Felt like it builds up fatigue over time, along with occasional days of g-i annoyances.
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Hi Misslil
I too am still on the nerylnx after my TCHP for her+ started in Feb 2018 almost done! Rough at the beginning still like you have the days of g i issues but it's tolerable.
Glad your doing good.
Wish this thread was more active. Hopefully everyone is just living life!
Hahlyn
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Hi, this is my first time on this site. I also have gone thru TCHP with a year of Herceptin. I have an appt with my MO nex week and she wants me to start Nerlynx. I am real nervous about the diarrhea and fatigue. How was it in the beginning and were you able to keep it in control? I had my reconstruction surgery last June 9.2017 and I am still dealing with an open wound. I have a wound vacuum and just finishing 37 of 40 days in a Hyperbaric Oxygen chamber. Any information would be appreciated. I am just trying to get my life back and be able to go back to work.
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Barb sorry - that sounds awefuk . I don't have experience with those shots so can't help you there.
Misslil - how was your MRI? I do the same - 6 mo checkups: mammo and MRI. Mine is coming up in March. I also wish for boring findings. I can't say I hate the MRI- it's the only chance I get to lie on my stomach 🤣😂🤣
Really hope all is well. Another woman I met on this site, who started her chemo in June 2016, committed suicide. Depression is a real bitch- side effects from treatments are more easily addressed when they are visible . Mental health and the silent depression is harder to diagnose, acknowledge and treat. Please seek treatment if you feel sad...
Otherwise, live life to the fullest - I feel like we are on borrowed time and every day needs to count!!!
Cheers
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Barb38, that sounds very uncomfortable with the open wound. Wish you full healing and able to resume work soon.
On Nerlynx, my MO monitored closely with office visits and bloodwork pretty much monthly. It's a new drug, I've been his first patient using it, and while I've done well, some cases had severe side effects especially in the original trial where the patients weren't yet recommended to use it in combination with a preventive like Imodium to control diarrhea.
There is a Nerlynx forum here you can check in, you'll see people have different experiences. Most seem to have managed through it, especially if using the "prophylactic" medication to avoid serious D issues. But some ladies have seen serious concerns or discontinued.
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Hello Ladies!
It just brings a smile to my face to see that everyone is doing well . I having been doing well also,enjoying life and my family. Until January.
I've been having lower back pain for a month now. I thought it was because I had an uti...but when I finished the antibiotic my back was still hurting. I was in so much pain I went to the ER last night, and the doctor said that my uti wasn't cleared yet, and that I may have kidney stones or sciatica. So I did an xray which showed no bone breakage or lesions, but he said to rule out kidney stones I need to have a ct scan. We did the ct scan and the dr. informed me that it wasn't kidney stones and that I have a spot on my spine and 1 spot on my left and right back bone( he used the medical name for the bones, I cant remember..lol) and I need to follow up with my oncologist b/c it looks like cancer.
I was devastated. The wind was knocked out of me. I couldn't breath. I have been cancer free, done got my hair back, worry free since march 2017...I was like dayum that is fast. I never expected to receive this kind of news. Now I gotta go thru all this sh** again. Now I gotta fight again. So, I had a good cry and said Happy Bday to me..lol. I see my oncologist this friday. My mom and husband says that I need to stop saying that the cancer has come back and wait on the oncologist to confirm the ER findings. I am just being realistic you know.
Honestly I am not scared b/c I have already been thru all of this. I am just pissed that I am having to go through this again. Thank you for letting me share my true feelings about this.:)
Sorry to be a party pooper:(
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Nayda,sorry about this. I don’t even know what to say. Well, first happy birthday - may you get to celebrate many healthy birthdays! Secondly, hang in there - you have been thru so much already, and you know you’ve got this! Please keep us posted. Sending a prayer out into the universe for you and a virtual hug xox
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Nayda, very sorry you're having these new concerns. Best wishes for your further diagnosis and recommendations. I hope it won't turn out to be what they think, or is very manageable with all the latest treatment options.
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Thank you smilethrupain and misslil....I go to see my oncologist in the morning. I hope its not cancer and if it is I am praying that it is manageable.
**hugs**
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oh Nayda, my heart is breaking for you...Praying for continued peace and quick answers
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@nayda985, how are you
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THANK YOU ALL FOR PRAYING FOR ME..I NEED IT:)
The lord has calmed me down somehow, because at first I was a mess and had high anxiety and I couldn't think straight and I couldn't stop crying..thank you all for praying for me..I am trying so hard to be strong.
My oncologist has also given me some hope....during our visit he said he saw the ct scan and he is not convinced that its cancer related and a petscan is more reliable when looking for tumors. He said the ct scan and pet scan is like apples vs oranges. He said he is also not convinced that it is cancer because my original cancer responded so well to chemo and I have been doing well with the hormone blocking therapy (the zolodex inj and arimedex) , that my chances of the cancer coming back is low.
He said that he has seen ppl respond well to chemo and still get a recurrence..so he wants me to do a petscan this monday coming and thats going to let us know if its cancer, and if it shows any abnormalities, then we will have to do a biopsy. He said that my blood work show my bone markers as normal. He was like if it is bone cancer they have some manageable treatment options. That it is not a death sentence.
But I just don't want to go through this again, you know. It took a lot out of me last time and it was very hard as you all know. The thought of having to go through this again and it being in my bone is life changing. I will have to deal with chemo and radiation forever. I am just hoping that I can "live"
**hugs**
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Nayda, thanks for letting us know how things are going. I hope the PET scan shows good news, definitely praying for you.
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nayda, how are you doing
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Thinking of you Nayda, hope you're doing ok
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Smile and miss and CC I am doing okay mentally...my body is in pain...hurts to walk, kinda ready to get this over with and find out whats going on with me.
My onc. showed me my pet scan and explained the images, The only way I can describe it, I saw multiple cluster of spots in the middle of my chest in between my lungs, on my left and right lower back bones, small cluster of spots on the outer edge of my liver. When I seen my pet scan, it took everything in me not scream.
My oncologist still optimistic that its not cancer. He says becuase there are cluster of spots in the middle of chest he thinks I have sarcoidosis( collection of inflammatory cells), but he needed me to do a ct/bone biopsy to confirm his diagnosis. So, I had to do the bone biopsy last thursday, now i am having to do the waiting game again. Yall know how that is..lol. I am getting ansy, i am ready to know whats going on so we can start the treatment.
I am suppose to get my results/my fate next wednesday. He said if its sarcoidosis they can treat it with steroids.
I am taking it a day at a time. Thank you for keeping me in your prayers, I really need them, I am struggling mentally and physically.
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Nayda, thanks for writing. I’ve been so worried. I hate the waiting game - did my annual MRI last Friday and couldn’t see the results for a week, started to freak out. You must be a ball of nerves!I dont have good words of encouragement. I read some where that no one has calmed down because they were told to “calm down”
I hope that waiting game is not too long, that you get good news and that’s you feel relief soon xox0 -
Nayda, thanks for letting us know. I can't imagine the worry but I hope your oncologist is on the right track and you get some good news to ease your mind and let you start to treat any new issues. Wish you all the best.
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Oh Nayda...I so hope and pray your doctor is correct! We've got to remember that they do this on the daily so have a much better idea of it all. I suspect I would have screamed at a scan like that too....terrifying. Please keep us posted and I'll keep you in prayers for healing and peace.
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Hi Nayda, just checking in - how are you
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Hey smile, thank you for asking about me, I haven't been on here because I have bad news.
I have stage 4 bone cancer.
I had my second biopsy this past tuesday, through my throat to get to my lungs, to see which one of the alphabets its feeding off of, to determine my treatment plan.
I am so ANGRY AND FRUSTRATED AND DEPRESSED! I am trying so hard to be strong and focus!
My husband finally had a meltdown this week, he had been holding it in for a while, he got drunk and couldn't stop crying saying he cannot live without me and if I die he will kill himself, he told me he is so upset with GOD,he wants to shoot my oncologist, he doesn't understand why he didn't catch it earlier, because I go to the cancer center every month to get my injection and every 3 months for my checkup, I told him that he cannot shoot the doctor and its not his fault and he has to be strong and our kids need him and I am not going any where. My eldest son, 21, had a melt down right after he got the news. I had to tell him to be strong and I would never leave him. My mom cries all the time and is also furious with my oncologist, and wants me to get another doctor. My 3 brothers are very angry and scared, but they don't cry in front of me. It breaks my heart every time I look at my 11 year old daughter and 7 year son.
So, I can't cry in front of them, I have to be strong around them and it is so hard. I have to have my melt down in private because I don't want to upset them. I don't understand how it came back so fast, you know? I thought I had at least 5 years before it would come back. I am currently on Norco 7.5 which is very constipating, haven't had a bm in 2 weeks. I have to take it or I am in excrutiating pain. My appetite has declined. I am losing weight. I need to focus and put my mind on maintaining. I haven't gotten there yet. All I can think about is the treatment coming, endless appointments, and I am knocking on death's door.
My mom says her friends are telling her that people can live a long time with stage 4 cancer and its not a death sentence. I thought to myself when she said that, well my onc didn't say I had a certain amount of months left to live. He just said it isn't cureable and they will keep it at bay and make it maintainable. But I feel like it is still STAGE FOUR BONE CANCER!!!!!
I am so pissed I am sick again its finna affect my new job. I changed jobs in August of last year, I finally have a job I absolutely love and I told my bosses that I want to work til I can't work anymore, and they are fine with that, and said they will support me fully far as appointments and treatment. They are so supportive and understanding and that is rare.
My whole family wants to treat me like an invalid. They think I need help with everything and it is upsetting! and I tell them to stop it! The weird thing is I am not upset with God and I still love God and faith in him. I just don't understand, you know. I am thankful that I have more time to be with my family. My husband and mother are planning trips now. My family doesn't like to travel, now everyone wants to travel, its funny to me. I am going to go where ever they want, to make them happy. I guess we are all trying to deal with my diagnosis at this time.
Sorry to be a party pooper.
Hugs******
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Nayda
I’ve been trying to figure out what to write since reading your post this morning. I still don’t know. I’m heartbroken. And angry too. I’ve also heard of stage 4 cancer survivors. I kinda agree with mom, at least get a second opinion...mainly because MO was downplaying the chances SO much. Your faith is what is going to keep you fighting, for your babies, for your whole family. I’m so happy for you that you have a supportive workplace AND it’s something that you love! That’s a rare blessing for sure. It’s so hard being strong because you don’t want your family to hurt anymore. I get it. Sometimes that hurts worse than the physical pain. Just know that many of us here are right beside you and can support you whenever you are feeling weak. I pray that you and your family can move into a place of peace soon, that treatment plans can be found that gives you a good quality of life, that an effective pain management can be foundsoon, that those trips are full of love and muchlaughter and that miracles will happen. Keep us all posted as you are able. 💕
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Oh Nayda, I want to scream to the heavens. I read this yesterday but didn’t know what to write. I was hoping that your fears were unfounded (just like mine last week, when I had a meltdown and trip to er followed by cat scan because of weird reaction to zoladex shot)... I’ve been thinking of you every day since reading your post in Feb. I don’t know what the right words or advice are... Your family is right - you have years so fill them with joy and experiences with kids. Starts journals for your kids - either electronic or hand written. Since I got sick, I’ve been teaching my kids (who are same age as your little ones) to be independent: small things, cook their fav dishes, shower alone, press clothes... My father died of heart attack when I was 10, and my memories of him are of experiences together - not his science discoveries and degrees. So I dance in the kitchen with my kids, teach my sombrero how to treat girls and dance with them... Live my dear like you have no care - pray for a miracle
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Nayda, I'm so truly sorry that you're dealing with this and that the news has not been better. I can't imagine the shock to yourself and your family, but glad to read that you have your faith, a family that obviously loves you tremendously, and a supportive workplace as you're entering into this very very difficult time. Please know that this forum is a place you can vent anytime you need.
I wish you all the best with your new phase of treatment, and that answers may be found to support you and your young family for many years to come. Praying for you all.
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