Triple Negative Stage IV
Comments
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Sorry, one more question. I probs have a couple of years to live. I'm 41, slim, and I like clothes. On one side I have no boob following my mx. Should I bother getting a recon or not? I'm not really fussed from my own point of view, and I do have a great prosthesis, but it is a bit awkward when i know people get a glimpse sometimes, as I quite often wear tops that aren't very high necked, and you can kind of see that it just drops away to nothing! And I have a beach holiday coming up. Not sure I'm being ridiculous even considering it. What would you ladies do / what have you done? xx PS I think I'd have to have one of those back-flap recons (not sure of the recovery time from that)
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Karen- wishing you good luck today when you pick up the scans. I hope you have a support person who will go with you as there is nothing more nerve wracking than reading scan reports.
Tortoise - I had a tram flap procedure before I was stage I. And never regretted it but it was a big operation and I was not immune suppressed at the time. I would talk to your oncologist about how it will impact your treatment and then speak to your plastic surgeon for suggestions.0 -
Karen- I hope all goes well on report day. I am sorry the radiologist added to your stress. I start my Xeloda tomorrow.
Tortoise - I'm glad you feel good about your additional testing. I hope your next treatment is just the right combo to put you into remission.0 -
How are you feeling, Karen, after your Xeloda today? Did Zelda behave?
That tumor profiling you had done sounds interesting, tortoise. I doubt my insurance company would pay for it, but it would be nice to be able to have it done. Although I'm tickled that the Xeloda worked so well for you.
I had labs drawn today. I got a cold this past weekend, but otherwise am feeling fine, so I was shocked that my neutropenic level was 150. So I'm now on antibiotics for the "cold" and started neupogen shots today. Next week's chemo I'll start getting the neulasta shot. For those who have had these shots, is there much of a difference between the two? Is one better than the other? I had neulasta during my chemo last year and absolutely, positively hated it. It gave me such bad body aches. I was hoping the neupogen was perhaps easier, but the nurse today told me there was no difference in the side effects; if I had body aches with one, I'd have it with the other. Then again, this was a nurse I never met before and she wasn't exactly friendly, so I'm not even sure I want to take her opinion.
In the meantime, I'm back to quarantine. This lady is going to be getting some bad cabin fever!
Janelle0 -
Did you get the neulasta shot in arm or stomach? I got them in stomach and only had mild muscle,pain for a day. I took Claritin for about a week and a percocet for two days after shot.
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Janelle - 40 minutes after I took the Xeloda - I noticed my palms were a mottled red and the red bit, seemed a little puffy. Otherwise - so far so good.
I sent my MO a photo of my hands, he said to take the next dose, but let him know if it got worse or started hurting.
I hate neulasta! It caused me - pray for death type pain. MO reduced it to 1/2 dose, much more manageable. I also like it in my belly, rather than arm. I hope your counts rebound soon love.0 -
So I did three days of neupogen, and got my levels back up to 1,900. Yay! Still staying inside until my appt tomorrow just to play it safe. The neupogen didn't affect me too poorly - a bit of bone pain, but I've been taking my ibuprofen and it really seems to help. My nurse is working with my insurance company to see if I can just take these at home. I get them in my belly, too. Can hardly feel it that way. But now my platelets are low, so I'm bruising from everything. If it's not one thing, it's something else, eh?
I'm just searching for some energy. All I'm doing is sleeping.
And I can't believe I'm concerned about this, but I can't seem to keep my weight on. I'm going to talk to my doctor about this next time I see her, but has anyone else experienced this? I mean, I have plenty to spare, but I've lost 7 pounds since I started chemo 3 weeks ago. And it's certainly not from exercising.
How are you doing, Karen? Have your hands gotten better? When is your next chemo?
Thinking of you all ~
Janelle0 -
I lost weight ( about 3kg or around 7 pounds) but I can't blame chemo- it was post part iv diagnosis but before chemo started. It was purely due to stress.
I hope you get your energy levels back soon.0 -
Janelle,
When I first started using a wheelchair, my muscles wasted and I lost plenty of weight unintentionally and certainly unwantedly. Make sure you are still moving around enough or doing something to keep the large muscles from weakening.
All the very best.
Angela0 -
Tonight I take my last dose of my first round of exloda. I take it twice a day for seven days, then off for seven days. Despite my initial mottled skin scare, it has been very easy. I have heard that the detox week can be bad, so... we will see.
Janelle - I am sorry you are having a rough go. Are they going to reduce your dose? For days when I need to have energy, I take Ritalin. I am starting a new exercise routine to keep my muscles. I have a little floor peddle exerciser and some 3 pound hand weights. I really need to up my protein - I am living on carbs.
Wishing everyone a good Wednesday!0 -
CSMommy, I had 2 neupogen shots in the belly last year with no se. My bloods are just holding up this time, so far. It's hard to avoid people who are infectious cos how do you know who they are? And I'm a big hugger.....
Also relate to the tiredness - I sleep an hour or so in the afternoon and about 9 hours a night. Spend lots of time just sitting in a comfy chair, watching tv or playing games on my phone. I do go to 2 yoga classes a week, and try to get walking on the beach a couple of times a week at least. The rest of everyday life just uses up all my energy. They say that exercise is good for the fatigue, and I'm always kind of surprised when I can get through the whole yoga class, and it makes me feel so pleased that I could do it!
I lost weight last year from chemo, didn't ever put it back on, then lost more from the time I got the stage IV dx - tension, anxiety, no appetite to talk of. I put on a little during this time I was with my family, but it's going again, I can't seem to keep it on either.
Tortoise, I say you need to do whatever is going to make you feel good - don't know that I could face more surgery myself, but that's me - as you say, who knows how long we will be around and we need to do the stuff that makes us feel good NOW!
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Well, just found out Weds. that abraxane is no longer working for me. So disappointed.Went in for a pet scan yesterday, although it wasnt as bad as it could be, its still not good. 3 tumors on chest wall, and possible new primary cancer in the right breast with 1 lymph node involved too. slight upptake in the thyroid also. No surgery planned right now on the breast, but will start me on ixempra or halevan next week after ekg on monday. Good news is no further liver or lung involvement.
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Mary - I am sorry that Abraxane stopped working. Thank goodness the progression wasn't as bad as it could be and that your liver and lungs are stable. I hope your new treatment works for a long long time.
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Carolben - I see on another post that you have scans on 9 May. I will be thinking of you and hoping for good news.
I am 3 weeks into carbo/taxol. My hair has started to fall out - it just has to last until tonight as we are going to a ball to raise money for the royal flying doctors.
My scans are at the end of May.0 -
So sorry to hear your news, Marywh - pleased about the liver and lungs tho! This is a bitch of a disease.
Yes, Gabpj, the scans are nervewracking - well, not the scan, just waiting for the results! Hope the ball was lovely and your hair stayed put!!
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Got scan results and the nodules in lungs have shrunk! Some by 50%, some by 30%, some not visible anymore! Am so relieved to know that the Taxol is working, now another 3 months of it seems very do-able, I was getting tired and feel new hope now.
First bit of good news in a long time, am feeling like my light has been switched on again.
Lost a big chunk of hair right in the front - almost at the point where I'm ready to just cut it really, really short, fuzzy, but not yet.....
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Wonderful news Carolben! Let's hope they all disappear next scan. I'm glad it has given you renewed hope and determination.
I find out next week if taxol is working for me and I am also holding on to my hair for as long as I can. I have been on chemo two times before and always shaved early but not this time (as I know chemo is my new reality I want to hold on to some sort of normality as long as I can)0 -
Carol, I just saw your post, what wonderful news! Thank the lord! Just what you needed to hear. Keep it up girl, you are going to kick this thing in the butt!!!
I had my second FAC this morning and was thinking about you all day. I looked earlier but you had not posted yet. I can't tell you how happy I am for you my friend!
Heading off to bed now, hopefully I can have sweet dreams now. Hugs and Congrats! Love ya! Debbie
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Hi all, I have a question. Does a post get removed for putting in information about where you are being treated? I can't seem to find that post. Is that a no-no? I need to know, I don't want to get in any trouble on these boards. I am not a great one for reading disclosures! LOL Please educate me on this matter. Thanks girls, you're all the best and you're all I have to relate to, you know what I am going through. Misery loves company, huh! Lots of great wishes for the best future possible! Take Care! Debbie
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Carol - that is wonderful news! I don't handle the taxanes well, glad you have enough hope, to continue on. I'm sure you rock the white buzz cut
Deb- I don't think it matters if you post where you were treated at all. Can you click on your name and look through your recent posts?
Started my 3rd round of Xeloda yesterday. So far, so good. I don't get my scans for another month. I so hope it is working, this is a drug I can do.
Wishing everyone a great weekend!0 -
Sooo pleased for you Carolben - really great news. And about time!!
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I'm newly diagnosed with mets to lung. Starting carboplatin/gemzar next week. I worked full time during my chemo in the past (A/C). Wondering about your experiences with these drugs. I had a bad experience with Taxol previously and ended up in the hospital for 6 days, so that limits my chemo options. Looking at clinical trials now as well - any advice is appreciated!
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Love for life - I am on carbo/taxol so can't comment on gemzar. The carbo week knocks me around a bit (tired and sluggish plus it really elevates my liver enzymes) but if you worked through AC I think that the side effects would be manageable. Just choose the day of chemo so that your off days are on the weekend.
There are some ladies on the tnbc site who have done carbo/gemzar and they may be able to help you as well.
Good luck and I am sorry you had to join us here.0 -
Hi everybody, havnt been on this thread in awhile. Things are so-so with me. Had progression on the abraxane after 8 months. Liver and lungs still stable, but had progression to the chest wall. Started on Halaven 2 weeks ago, but have to see how my ekg is this week before he will let me do anymore. Ekg was way off last week and had to skip a week. Did do it on Monday, but havnt gone for my ekg yet. If its bad then I will go on to the dreaded Ixempra. From what Ive heard its not very pleasant.So keep your fingers crossed that ekg is o.k and I can continue on with the havalen.
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Marywh - I will keep you in my thoughts/prayers this week. I hope you get good news with your EKG. Are the other SE of Halaven am manageable?
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Side effects from Halaven itself are pretty tolerable after the steroids wear off which I absolutely hate anyway. Other than that a little nausea is about it.
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Love for life- I found the side effects of carbo/gemzar much easier than ACT. I too, don't tolerate the Taxanes well.
One big problem some have, is that it tanks their blood counts.
I hope you have success with it.
Marywh - wishing you great EKG results!!!!0 -
Hi! I hope you're still around! I have what you have. Breast cancer with mets to my spinal fluid. I also had mets to liver, but that's gone now. I would love to talk to you if ou feel up for it.
Brandi0 -
Hello ladies, sorry to keep banging on about this but my nails, my nails. What to do? They are starting to lift and they hurt badly. It seems daft to stop treatment when it's working over something non-life threatening like nails, but how bad do things have to get (on taxol now for 19 weeks)?
Also suffered a bit over the last few days with the neupogen shots. It really feels like the start of the slippery slope. Sorry to be so negative
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Anko,
Are you painting your nails with thick nailpolish? This prevents UV exposure to the nailbeds and seems to mitigate Taxane induced nail lifting.
Also, I soaked my finger tips in witch hazel whenever they were bugging me. It seemed to help. I did a year of Taxol, and only had three fingernails start to lift.
You could also ice your fingertips during treatment. I tried that for a bit, but was too wussy to really keep the fingers cold. It hurts!
If your toenails haven't started to go but your fingernails have, I'd try the nailpolish, as that would lead me to suspect UV damage to the nailbeds. Taxol can make you very photo-sensitive.
Neupogen is nasty, but effective. Are they giving you proper pain meds for the bone pain?
Jennifer
Edited to state that I'm not triple neg, but read the posts because I learn a lot from you guys.
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