Best Of
Re: My Husband, My Life, My Love, My Family, My Cancer
@tanya_djamila @snow-drop @intolight @irishlove @illimae @mara51506 @eleanora @cookie54 @threetree @wren44 @goldensrbest @mkestrel@candy-678 @gailmary and all whom I have missed here. Saying Hi and updating. I had my last scan yesterday the brain MRI. . Last week the nM Bone & the CT Scans. I haven’t been feeling too well since. Nausea, acid reflux and esophageal pain, extreme tiredness and another annoying cough that keeps me awake at night.. I got the MY Chart notification this morning on my CT results. I’m really confused by it and has me questioning this cough I’ve had. Usually the scans always say stable and unremarkable and all organs are normal…. this time they mention GGO. ground glass opacity in both lobes. and in the impression they keep mentioning scattered sclerotic metastases and mention of lesion in femur and pubic groin. area…..this i all so new, but in the impression summary……. Am i being paranoid about my lungs?
FINDINGS:
CHEST:THORACIC INLET: Normal.
MEDIASTINUM/HILA/AXILLA: Stable posterior mediastinal node superiorly measures 1.3 x 0.8 cm in the tracheoesophageal groove on the right.
CARDIOVASCULAR: Cardiac size is normal. No pericardial effusion.
LUNGS: Central tracheobronchial tree is patent. Mild scattered atelectasis. There is patchy groundglass opacities bilateral lower lobes right upper lobe posteriorly slightly increased in conspicuity from prior examination. No suspicious nodule. No mass or consolidation. No pleural effusion. No pneumothorax.
BONES/SOFT TISSUES: Scattered sclerotic osseous metastasis. Postsurgical changes of the left breast and axilla.
ABDOMEN/PELVIS:HEPATOBILIARY: Liver is normal.
Gallbladder and biliary tree are normal. SPLEEN: Normal.
PANCREAS: Normal.
ADRENALS: Normal.
KIDNEYS/URETERS/BLADDER:
Normal. REPRODUCTIVE ORGANS: Uterus and adnexa are unremarkable.
BOWEL: Moderate hiatal hernia. No bowel obstruction.
PERITONEUM/RETROPERITONEUM: No adenopathy or ascites.
VASCULATURE: Scattered arterial calcifications. No abdominal aortic aneurysm.
BONES/SOFT TISSUES: Scattered sclerotic osseous metastasis. Surgical changes in the right anterior abdominal wall ____________________
IMPRESSION: 1. Scattered sclerotic osseous metastasis.
2. Posterior mediastinal node, stable.
3. Patchy groundglass opacities bilateral lower lobes and right upper lobe posteriorly slightly increased in conspicuity from prior examination. Findings may reflect infectious/inflammatory process.
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Re: CMF treatment survivors and experiences
Hi there, I am 52 years old and had the same chemo course. Looks like you would have started already. I had mine from Jan 2016 to Sept 2016. I hope you are doing well!
Re: Doing Well on Aromatase Inhibitors (AIs)
I was on generic anastrozole (Teva) for 3 years and had many aches and pains and when I woke up in the morning my legs felt like they were made out of cement. The pains got progressively worse, especially the tops of my feet. It got so bad at the beginning of this year that I was having trouble walking. I switched to the brand name Arimidex in February and it was life changing!! I still have a bit of stiffness and my feet have a slight ache, but nothing like it was on the generic. I do try to get 30-minutes of exercise a day and I take a multi-vitamin, vitamin d, krill oil, and magnesium. Exercise definitely helps - which is the last thing you want to do when you are feeling so terrible - go figure.
Re: CMF treatment survivors and experiences
Hi Kate - Glad your 1st treatment was ok. CMF was what my oncologist recommended - my oncotype score was 25, my tumor was stage 1A and small - but a grade 3 - so dr recommended CMF due to oncotype score and grade 3. Dr told me it was not a heavy duty chemo but that I should do it. I was shell-shocked - with the input and support of my family and trusting my oncologist I went forward. I don't feel like I've had any long-term side affects from the chemo - other than creaky knees. My knees never made noise before - weird right? Are you doing the Neulasta ? That was as bad as the chemo - but again onc said it was a must. I never felt too sick day of chemo - was always the day after. Hopefully it will be different for you. I am wishing you much luck. BTW I am 57.
Re: CMF treatment survivors and experiences
Hi - I had 8 rounds of CMF chemo spaced 2 weeks apart at the end of 2016. It was a very manageable treatment - I continued to work through my treatment. Had chemo on Tuesday afternoons then worked from home on Wednesdays and back to the office on Thursday. I was the sickest with the first treatment and then a little less sick with each additional treatment. Sick being nauseous the day following treatment and not being able to eat or smell food - by treatment #4 this passed. They told me to drink lots of water to flush my system - which is hard when you are nauseous. The worse part was the Neulasta Onpro shot - which self injected the day after chemo - that shot made me feel sick and made by long bones ache horribly. Tip from a chemo nurse was to take Claritin (regular) beginning the day before chemo and continuing for two days after - they don't really know why, but the Claritin works and alleviated this pain. I did not lose my hair - though it did thin some, but came back once treatment ended - I do take biotin. I never got any kind of mouth sores, just some dry skin - Lubriderm helped that. I didn't have a port. Though I continued to work through my treatment - once I got home each day I was in my pjs by 5pm. The treatment made me very tired - not my mind, my body. I was also very sensitive to smells - had to ask a coworker to stop using her scented hand lotion and my husband to not cook on treatment day and day after.
Let me know if you have any specific questions I can answer. Best of luck to you.
Re: Double Mastectomy
I just had a double mastectomy in July, I'm 51. Now I do plan to have some reconstruction & have expanders currently, so I realize a little different, but wanted to reach out as at the end of the day we are all in this together.
I was ok with the loss of my breasts, tho they had gotten to be overly large.... But I won't lie, I woke up from surgery & kept asking "what did I do?!" I kept asking for pain meds. Now, I give the recovery nurse the humor credit, she told me I'd have to ask the doctors what I did! (It was what I needed at the time.)
My surgeon said her patients that do the best take the pain meds on schedule, & I would definitely suggest that! Stay ahead of it, it will help in the long run. Take it easy, and get all the help you can! It's not a simple procedure, but if you take your time you'll be ok.
And @rowan47 is right, the drains are a pain & the worst part in my opinion. Once those came out I felt more human!
Listen to me being only 33 days post surgery!
For me now it's the expanders bothering me, and I started chemo last week.....
I do plan on making lemonade out of the lemons I was handed tho.... Planning on the DIEP flap reconstruction (after I finish chemo, so sometime next year) .... Figure I've been "growing" my own replacement & will get a better tummy out of the deal too! I'm calling them my future "belly boobs!"
I'm new on here too & am open to any advice, connections, etc.
Stay positive & strong!
dianeb74
Re: Ladies in their 30s?
hi Vmitx 
Sorry you’re here and in this club. I was diagnosed de novo in 2018 at 30 though my symptoms started about two years before then. I am BRCA2 positive. I have done relatively well up until a few months ago. I’m doing okay but I do have ascites (fluid In The belly) and have had some complications as of late. Hoping that Ibrance (which I’m on the 3rd cycle of ) is taking care of things or atleast keeping me stable so I have a lot more time. I have a 6 year old son who will be 7 in May and he’s been becoming more aware that I’m sick and that it’s quite serious. It’s been tough. I’m not in your area , I’m in Canada but feel free to message me if you like. It’s hard being so young and facing this disease. You’re certainly not alone
B-A-P
Re: Ladies in their 30s?
Hi!
I’ve been reading these for months (and have found them so comforting!), but haven’t posted anything yet. I was diagnosed de novo in December of 2020 at 34. No genetic component and no family history of breast cancer. Currently stable (yay!), but obviously dealing with all the physical side effects of this horrific disease and especially the mental health impacts these days…
I am in Houston, and I don’t know a single person my age who is also metastatic. It is so lonely and isolating. Everyone else I know is having babies, making career moves, buying bigger houses, and just “living their best life.” I want to celebrate them, and at the same time I am so sad about everything that’s been stolen from me. I would love to connect with others here just to know I’m not alone. And if anyone is close to the Houston area (or travels to MDA), please let me know!!
I am also curious if anyone is thinking about or has pursued surrogacy after being diagnosed metastatic. I had gotten married 7 months before diagnosis, and we were hoping for a family. I have so many feelings about this. The short version is that I don’t know if I can bring a child into this world knowing I likely won’t get to raise it. But at the same time it’s my husband’s life too, and he really wants kids. I would love to chat with anyone going through/who has gone though this.
Looking forward to connecting here!! And hoping for a 2022 filled with good health for all of us who are facing this ❤️
vmivers
Re: Ladies in their 30s?
Hi ladies it’s me again. I just wanted to see if anyone has had this issue. Recently I went to see my gynae and she said I have endometrial thickening despite being on Lucrin/ Lupron for past couple of months. I’m being monitored for the endometrial thickening and she is saying I might have to do a d & c after I’m done with chemo for my lung met that was discovered through a routine pet scan. I still have 2 cycles left,
I’m just feeling like one after the other when does it end! It feels so unfair at 30 I have to face all these problems when all of my friends are either pregnant or giving birth. It upsets me that I might never have the chance. How do I just accept this ordeal that life has thrown at me. I feel happy for my friends that are expecting but it just hurts me to know that it might not be in my future ever. Holding onto a miracle and just taking it a day at a time.
Any advice would be appreciated.
Re: Ladies in their 30s?
nikisworld- so sorry you find yourself here. 25 is young to have to deal with this disease...30 is very young for stage 4...I’m sure there are lots of thoughts and feelings surrounding your dx. I just wanted to chime in and say welcome and offer a little hope...although I was older and am older now...I was dx stage 4 at 34 years old and I am now 41 1/2! I have no words of wisdom or what to do or not to do...this disease is simply about finding the right drug for your specific cancer...I will pray that you find the magic combo and things go as well as possible! Sending hugs.
kjones13