Starting Chemo September 2015; join us!
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Grey, I still have 2 more rounds to go, you are not alone.
I was looking for posts from you, but I can't keep up with this busy board!
Do you get neulasta or anything to boost WBC?
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Hi ladies, just checking in and catching up on everyone's updates.
I'm on day 3 post chemo #4 of 6.I'm definitely feeling cumulative effects of fatigue. I'm so exhausted. I'm currently at the infusion center getting my bag of saline followed by the neulasta shot. I'm dreading the bone pain that's coming.
The Monday and Tuesday after chemo are the worst days for me (day 4-5)..so the upcoming 2 days.
I'm relieved that this round I haven't had C. Last round was horrible in that regard. Just hoping the poop diary sticks with me.
In terms of my diagnosis. My aunt and cousin have had BC. I got my first mammogram at 35 due to that family history. Then annual mammos starting at 40. I had a few mammograms come back with calcification so they wanted to watch closely, so I was going back every 6 months for a while. Then I was cleared to come back for my next mammogram in a normal year. It was at that next visit that they saw an enlarged lymph node. Biopsy said it was cancer. The problem is they never found a primary location in my breast. So I'm "unknown primary".
Then my genetic test came back positive for a new genetic variant that they are only just learning about, They are not sure of the significance. So due t that, my young age, and family history I'm likely moving up to a double mastectomy with the removal of the lymph node.
I'm still very freaked out and overwhelmed by what's ahead.
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Ok my experience.
I was 36 when I found it in the shower and went in to my primary doc. A day and a half later I was standing in front of that monster mammo. I have dense breasts, mainly heriditary and not having kids, yet. They saw the mass and I had an apt right after for an ultra sound. Not a cyst was all we knew. They immediately did a biopsy (that stapler sound still haunts my nightmares). This 25 looking 40 yr old took 6 samples, it's amazing that I had a tumor left! 3 days later got the call at home. It was cancer.
Over the next few days we told the family and I was in denial. I would acknowledge it but really didn't believe it. We saw an idiot oncologist we fired immediately and saw a radiologist we loved, I cracked jokes, my defense mechanism, and we all laughed. He kept saying this is supposed to be serious, well I do take it seriously but the tension in the room needed some laughter, just how I am. At the end of the apt he recommended a single mastecomy and he never wanted to see us again, he really didn't like the fact of my age and radiation. He was hoping I could avoid it.
Next came the question of fertility, should we harvest embryos? Would I be able to carry? Surrogate? We scheduled an apt, even though none of this is covered by insurance. We met and it seemed possible but our window was closing fast. We waited until the chest mri and the ct scan results. MRI was loud! Those 1970s headphones don't work but the valium did.
The ct scan was my turning point. I sat there in these poncho looking pants (i labeled cancer pants on my blog)at the machine thinking while she did my iv. I almost cried but shook it off. This was my life, this will be a part of who I am now. I finally accepted cancer. The ct scan was good. I layed there and thought I felt the iodine. I was flushed and very warm. I'm like ok this is normal. Then she pipes in "ok now we are administering the iodine." Whoa wait wtf! I mentally mimiced the symptoms, great. Then felt the real iodine, yeah I was way off.
Next up the results. We were asked to come in, not good. My surgeon saw us and as she told us about spots on my liver as she was crying. My hubby lost it as I did. I sat there for 5 min shocked and then asked questions. She asked if I wanted to see these spots. Yes of course. They looked like the one in my breast. Not good. We had to schedule a liver biopsy. We told our bad news to the family. It was not looking good.10 days later we went in for a liver biopsy. Iv and shitty drugs. That was painful but necessary. Most pain I've felt in my life happened after when my diaphragm had nerve muscle spasms. Couldn't breath, scared the nurses since it not a usual occurrence. But it did go away with time and oxy. Bone scan was a breeze, not much to report there.
More waiting, during this time I worked full time and we hired a temp to help me cover my work, I'm an accountant. I put my life insurance and disability insurance in order. Very morbid to have to do that in your 30-40s.The first day the temp worked I got a call. There were 2 spots and they looked the same so they did a biopsy on the easier one. The spot they tested was negative! All docs on my team 3-4 were sure it was cancer but nope. Shocked them all in a great way. Bone scan clear as well! So my surgery point of view went from a single to a double, I do not want leave anything to chance. I didn't want to go through this again.
So happy to be back to stage 2.Here's where it got messy. The surgry included a reconstruction and the docs schedules matched up but it was wayyyyy to long to wait. The date was my birthday in September and here we were in July. Unacceptable. They did find time on 8/21. So my dx and my surgery it took 70 days. So bad.
The fertility idea was back on. We met and decided our best window was right after surgery before chemo. So it was decided, we harvest embryos.
The surgery. Ugh so the morning the hospital door was locked, yes locked. Lucky that was the only locked door. Why would they lock it? Makes no sense. Next we checked in then we argued with the nurses about my blood type. I know my type and they kept saying it was different, idiots. She then realized she had the wrong patient on the screen. Omg! We saw the surgeon and plastic surgeon and went over what to expect. Next was the iv. Apparently it needed to be in the foot, minor detail they left out. I fear needles and nurses who miss veins. Yes the nurse missed. She did leave to get me the cardio nurse who did it painlessly. But after she left I freaked out with my hubby and plastic surgeon there. I kept saying "this isn't real, this isn't my life, I don't want this!" Hubby cried a lil and the plastic surgeon did a great job calming me down. He was very good at it, even though he felt bad too that I had to go through this. He next sat me up and marked me with a felt tip marker. Very nip tuck show like. He cracked jokes and had me laughing when the painless nurse came back. Good guy.The iv was in and my mom showed up. She's loud alot and over bearing sometimes. The anesthesiologist came by, very calm like he doses himself. Cool dude best drugs. He gave me a lil something to take the edge off then heard my mom being a tad loud and said to me, "you feel that? Yes? Ok I'm giving you the rest. " I remember nothing after that. They tell me I kept talking about vacationing in Belize.
I woke up and found out about the nodes. Hubby knew already. I cried. It was one of the worst moments in my life. But, yes but the nurse assigned to take care of me when I woke up was a survivor and she was very funny.They wheeled me to my room where I learned to shower, empty drains, and wake up every 4 hours. I stayed two nights but they tried to kick me out after 1. I enjoyed the room service.Recovery was about a week. Not too bad. The most pain was from the expander fills.
I did the home injections myself for fertility shots for about a week. I did ultra sounds every 3 days and we got 9 embryos! That procedure was awesome! The cocktail they have me caused me to do some sort of stand up comedian thing during the harvest. I had every one laughing in that room and even the little window where the eggs get passed through. I remember nothing but I'm told I was the best they have operated on. I wished they would have recorded it. Very curious on what dark secrets might have been told.I healed fast and started chemo on 9/25 and still did my fills on chemo for another few weeks. Painful but I think they are worth it to me to better get over this. AC was easy for me compared to some. I had minimal side effects. Hoping taxol the same.
Alicia
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Still scared of the next CT scan, what if one of those liver spots is gone...
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El Tigre, did you have your surgery at OHSU also? If so, who is your BS? My current plan is to have a re-excision around late January to get clean margins. They also want to take more lymph nodes for testing. 😕
I'm also an accountant. How are you doing with chemo brain? I'm finding it harder to concentrate and everything is taking me longer. It's very frustrating!
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No I was at peacehealth, horrible! Went to OHSU right after. I still see someone at peacehealth for PT lymphatic cording and to get my range of motion back.
Chemo Brain, I have not had that experience, that I am aware of. I do get exhausted some days after lunch, and my mind does not work as well, that could be it. I meditate and see if that helps and sometimes it does bring me back, if not well it's a long lunch for me
. Most of my work has checks and balances so if i make a mistake it'll show up. Thank goodness.My hang up is listening to co-workers stupid complaints. I know i should focus on myself and not let that get to me but sometime i fall into that habit.
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Twiggy, yes my work does take me longer. Do they understand at your work? At mine we had a few others go through Chemo so I feel they "get it".
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Twiggy - Get a clear picture of what lympth nodes they will take or how many. They took all of my left arm auxiliary nodes. Leaves me at high risk of lympthedema. Radiation will also kick up the chances of it. But my PT says if we're diligent about how we are caring for our arm we will not end up with a full blown stage IV case of Lympthedema.
Why does my spellcheck think Lympthedema is "lampshade" or "Mealymouthed"? I have never types either on my laptop
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Yes, my boss and co-workers are extremely supportive. One co-worker has been thru chemo so she really gets it. I have an office set up at home so I can work there when the side effects demand and I'll also be staying home if people at the office are sick. So far I've been able to keep up with the basic work. I just can't do any extra projects. Year-end close is looming and that is always a very busy time. I feel extremely fortunate to work for such a supportive company.
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Twiggy - good to hear. Year end .... we are in the mist of it at my work. We have impeciable timing
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I also get annoyed listening to others complaints. I just sit in my office thinking "I'd gladly take that problem instead of cancer!" Actually, I'm really thinking I'd trade them but I wouldn't wish this on ANYBODY!
I'm very worried about the possibility of lymphedema. My cancer is on my left side and I'm left handed. I well definitely be talking with surgeon about that.
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I'm glad I don't work right now. I remember all the petty things people whine about. Seriously? Enjoy what you got. Some have it far worse than you. My blood pressure would be through the roof if I was at work with those chatty ungrateful peeps.
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I know the feeling. I welcome the problems of not being able to sleep or my back hurts over this.
They do inject dye in before the surgeries you would think they could leave some nodes if the dye doesn't show up in them. I'm a righty and my left is my golden arm from now on. I hope they leave a few nodes so you won't be at a high risk for it. OHSU has to be way better than peacehealth.
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OHSU is got to be better than Peacehealth. They inject dye in the nodes areas so you woudl think they could leave a few.
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Yeah i'm about there Artista... woudl love to smack a few of those people
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So I decided since we are having an cold CA winter by our standards this year to get a wig. I'm getting this.
http://www.dresslily.com/medium-bouffant-curly-sid...
Southern: Does it come with the wig stand? If not, where do you get it?
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Hi ladies! Thanks for sharing your stories.
Today, my daughter pretended to take off what remains of my eyebrows and put them on her face, lol. I have no idea where that came from (she's 2).
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that's a cute wig. I wish my real hair would do that. I hope it comes back more curly than before and darker.
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I'm having one of those antsy days. I don't feel bad, tired, but not bad, but I just can't settle. Wish I'd skipped the adderall + coffee morning, now I'm stuck.
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My real hair does similar. I just need to use Wen as a leave in with some Morrocco Method gel on it and it'll go very similar except I can have curls too, not just waves. But alas, I've heard being on Tamox or AI thins your hair so not sure what I'll wind up with when it does grow back. I already was having hair loss issues, much less with 10 years of more meds.
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Check out the reviews of the dresslily website. I'm not sure it's a legit site.
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Southern ordered a wig from there and posted it. Don't know what page it's on. That's how I found it.
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My story:
December 2014 i had a normal, routine mammogram with the usual dense breast letter. In Feb/March I started noticing pain in my nipple. Early March I had my annual physical and mentioned to my PCP that an area felt "thick" in my left breast. She felt it carefully and thought it was just fatty breast tissue. For a couple months I convinced myself the pain was coming and going with my period. By June I could no longer deny an issue and made an appointment with my PCP. That was a REALLY HARD phone call to make. She still didn't feel anything but sent me for a mammogram since I was having discomfort. The radiologist did see something on the mammo and they did an US right away also. The US tech says no blood flow and cancer loves blood. The radiologist said he sees something and just wants to keep an eye on it. They did a magnified mammo and sent me home. Back to PCP two days later. Radiologist says probably benign and COME BACK IN SIX MONTHS to recheck. I couldn't do that so I went to a surgeon for followup. He did not do an MRI and said we could either do a biopsy or lumpectomy right away. Still thinking it's benign I opted for the lumpectomy because it was bothering me and I wanted it out regardless. At the followup appt the surgeon says they did find cancer but it was small (not exactly) and in his opinion he got it all out (nope, the pathology report told you that buddy). It would be a bump in the road (sure) and a little radiation (I wish) and I would be fine (hoping at least this part was right). We had done some reading about the pathology reports at that time and I said something about grade 3 being bad. The surgeon said something about he wasn't really up on those details. Huh?! Why in the hell are you treating women with breast issues if you are not going to bother being knowledgeable about the issue?
Skipping a bit of info, I discovered the surgeon was not a preferred provider on my insurance. I called the cancer center in my state and the guy on the other end (Dave) felt like a god send to me. He was calm and reassuring and I just felt like they were going to take care of me. He had me in within two weeks to see a BS and a MO. It was a whirlwind for a while. The great thing about the cancer center is the speed with which I was able to get things done. On 8/27 I had BS and MO appts, CT scan, and pet scan. On 8/28 I had echo and labs. On 9/4 port insertion and first chemo on 9/11. At a more local facility I would have just seen an MO for an initial appointment by that time.
I know we are all worried about reoccurrance and mets. That's a fear we are going to have to learn to cope with. I do want to let you know though that I know a lady who had breast cancer in her mid twenties and has now been cancer free for over 30 years! There is hope!
Hugs to you all!
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Oh I thought you already got it. Where did you get the one you had posted from? I think it's the same one in your profile pic. You had showed front view and back view pages ago.
What do you cover it with so it won't get dusty?
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This one was rough for me too. Stayed in bed for two days. Bones hurt, muscles hurt.
I too said too my husband " that's it I'm not doing the last one" But I know one more and I'm done !!
Why no ibuprofen? I've been taken it!
Does anyone know how soon after chemo they start you on the hormone pill?
Has anyone stopped having their period? This sycle I skipped.
Hang in there !! We are all so close!!
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MOs vary so much in what they recommend. One says no Ibuprofin because it causes thinning of the blood (it's an NSAID) and another says no Tylenol because it increases your liver enzymes which chemo does. So who knows. Just like with supplements. My motto has been screw it. Whatever helps me. I have my "magical" formula of vit supps that no one can prove interferes, and I have far more good days than bad. After day 4 from chemo, I feel like my old self clear until the next round. That's 10 days of feeling great. Not going to mess with it.
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It surprises me how persistent we have to be to get our bodies checked out.
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Look
what my husband got for me tonight: cookie cake with "no more" (chemo) on it! For all of you as well:
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aga-I start my hormone pill about 3 days after radiation is over (radiation follows chemo for me since I had a lumpectomy). I stopped having my period after my third cycle. We shall see if it comes back..
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I have not had a period since the first round.. Hormone suppression starts after radiation for me also.
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