Triple Negative Stage IV
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Rosieo and Texasrose - I was thinking of you two and checking in. You reached out when I posted in the Stage IV stories forum end of summer sometime. I'll start my 5th cycle of gem/carbo this Tues. It is working well for me...softball tumors are lemons now. I had a treatment delay after the 3rd and have started Neulasta injections to help. So far so good but I am having scans this Thursday. I've started to gain weight and my belly is distended a bit which is what clued me in to this problem with my liver to begin with. My doctor isn't particularly worried but offered to do scans for my peace of mind. I can't imagine what else the problem could be...theories about swelling and hormonal bloating don't make sense as I know myself. But I've love for them to be right. I'd love to just be getting fat! I'm way too scrawny, always have been which is why the change signals more concern to me I think.
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Hey Kaayborg,
Excellent news that are you see results! Praying your scan turns out to be nothing and helps with your peace of mind. Stave IV has a tendency of making us more in tune with our body and watching every ache, pain and change that may be just age or normal body changes. Weight gain is typical especially if they have you on steroids. I always had a flat belly until chemo came along. I remember complaining to my ONC about the weight gain....and he answered "Oh that would be my fault because of the steroids". How often do you do your chemo? Keep us posted on your results!
Prayers coming your way!
Julie
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We found out about two wreks ago that my Jenny is at Stage IV. She had a seizure in the shower and broke 3 ribs. An MRI was done and showed she had brain mets. She also had a cough and fluid in the space around her lungs. The fluid showed that there were lung mets, but they're not sure where the lesion is. She had a catheter put in today to remove the fluid.
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Julie,
I didn't have my email notification on so I almost missed you (again). I'm slowing figuring out these forums, not so techy here. My scan was unchanged...so I do feel so much more at ease. Also a little silly for the freak out but I've promised myself never to hesitate to ask any question, etc of fear of sounding dumb or whatever. Stomach is still far from flat. My doctor thinks I could be reacting to foods differently with chemo. My sister-in-law mentioned steroids as you did. Either way, just glad it's not the liver. How are you feeling now after your accident? Back to normal (whatever that is)?
Alan,
So very sorry to hear about Jenny. Thinking and praying for you both.
Missy
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Rosieo,
I am on gem/carbo too. I have a "wish I would have known" tip for you. I had my first 2 cycles of treatment with an iv. Then I ran out of good veins and got a port. I wish I had gotten the port straight away, because the veins in my arm are a mess. They are so swollen and red and sore and they haven't even been used in 6 weeks. They were never this sore even when they were being used. If you don't already have a port and if you stay on this drug combo for long at all (I think it's the gemzar that is so hard on the veins), get one for sure.
Were you able to have treatment on the 22nd? I go on Tues to start my fifth cycle, I think. Starting to lose count. I've had one delay b/c of wbc but am now on neulasta so hopefully that is doing its job.
Missy
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Concernedhubby
There is a brain mets thread (Brain Mets sisters) which you might find helpful. A lot of data you may see on Google is out of date. Sorry tat you and your wife have to go through this.
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Thanks, Missy. Gentle hugs!
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Thank you so much. Gentle hugs!
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hey kaayborg, thanks for asking...doing much better after the accident. Back to my normal stage 4 self. Which is almost like my normal self
. This next week is my off week from chemo. Then CT scan on the 5th. Praying everything is still NED. So glad your scan was unchanged!! The waiting for the results is the worst part.Hope everyone is having a good weekend! God bless all of you as you continue to travel on this journey
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Good morning all.....been kinda quiet so I thought I would bump this. Hoping everyone is doing well!!
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Hey everyone ! Ive been MIA for a little while. Lots going on. I remain NED from the neck down and it warranted me a chemo holiday. My last treatment was Sept 3. I had a clear neck down scan on 10/3 but the brain MRI showed 2 small brain mets. One adjacent to the old site and one on top of my head. In the interium between scheduled cyber knife treatments, my oncologist decided we should check my cerebral spinal fluid for mets there (SCARY) I had 3 spinal taps (NEVER EVER AGAIN WITHOUT SEDATION) and they were negative THANK GOD. But in the middle of that, my father passed away. Its been so hard. And it hit really close to home internally for me. My mom is having a really hard time and I guess anyone would after 63 years of marriage ! I had cyberknife radiation 2 weeks ago, they decided on one very long treatment. Ive almost recovered from that, just get a little tiny tiny bit of vertigo when Im up for a while. Im not feeling as great as I wanted to off chemo, but I think that stuff just really exited my body about 10 days ago ! My hair all of a sudden started growing like CRAZY and my taste buds returned along with my hot flashes lol I go back Dec 7 for scans.
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Hi everyone,
I'm am a TN gal and just recently diagnosed with bone mets. I have a tumor on my sternum and mets on my spine (L4). My Onc has put me on 15 rounds of rads to treat my sternum and then I'm going to start chemo after rads is finished. I don't know yet what chemo drugs I'm going to be doing but I have an appt scheduled with him for next Monday to find out. He told me there are alot of options available that he'll start me on a couple of pretty aggressive drugs. He said that they will be easier to handle than the AC/T I was on the first time and that I may not even lose my hair. Unfortunately my hair is the least of my worries
I'm getting my port in next week and hopefully starting chemo the week of Nov 16th. I'm not looking forward to chemo again but just that feeling of wanting to take care of things asap. I'm really unsure of what the future has in store for me. I was shocked (as everyone is) by getting this diagnosis and now just determined to make the best of a really crappy situation. I'm glad to have found this thread. 0 -
Hey Lauralind....missed you! So sorry to hear about your father. Prayers coming your way for you and your family.
Lainey64...welcome to this discussion board. We are here for you!
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Julie, thanks for the bump. It is somehow so comforting just to read a new post in the forum. Here I feel like the only one among lots of "normal" people. But you are all out there and none of us is alone. I have been thinking of you this week as you approach scans on Thurs. May you remain unremarkable! My favorite new word to be. Holding hope for the day my liver ain't so special.
Happy that you've joined us Lainey! I had the exact same response as you to the perk of not having hair loss. Great but I so don't very much care this time...just let me live! Truth be told after some time now, it is nice to still have hair. I'll enjoy it while it lasts. Who knows what may be next?
Lauralind, glad to hear from you (and for me it's for the first time since I'm new around here...so nice to meet you). Very sorry about your loss. Ughhh. Loss is so hard, no matter when, no matter how.
As for me, cycle 5 of gem/carbo is done as of today. I was worried about my platelets but they actually increased between day 1 and 8...interesting but I'll take it! I am now sporting an "on body injector" for my Neulasta injection. I feel very sci-fi, with my robotic mouse (what my port looks like to me scurrying beneath my skin) and now this! I'm so cool!!!! All is good, though and steriods have me tidying up everything around the house again and typing long and fast. Bye now! And best to all you brave ladies!
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I have an appointment to meet with my Onc on Monday. He is going to tell me what drugs he'll be starting me on. I am so anxious to get this information. I feel like then I'll be able to start my research to see what I'm going to have in store for me. Or at least get an idea of what kind of SE's I'll be looking at. Today is #10 of radiation for me as well. I am not going to be happy about anything until chemo starts. I know that the rads is supposed to be shrinking the tumor on my sternum but it just doesn't feel like "enough".
Thanks for the welcomes everyone... XOXO
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Lainey good luck today ! I understand your feeling of not enough.
Its been raining nonstop here in NC and now its cool and rainy and my chemo induced arthritis type stuff is killing me ! Ugh if its not one thing its another.
Hope everyone has a good week !
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Just bumping
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Rosieo, how are you feeling? I often think of you especially since our mets dx came near the same time. Hope you are finding effective treatment and peace of mind.
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Kaayborg I gained 60 lbs since last October. ... Mostly because of steroids. I was on some pretty hefty doses of steroids because of my brain tumor last year and then was on steroids for chemo. I've been off steroids for a few months and I've lost 11 lbs. thank God.
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Yes, several have mentioned now that steroids could be to blame...not my doctor, though, so I'm thinking I'll ask about that. I think I've gotten over the worry that it's "liver weight" and am just going with the flow. I surely cannot keep getting alarmed by every little change. Scans in a little over 3 weeks.
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Rosieo
Know you're interested in platelets. I went in for Day 8 chemo treatment today to find platelets had dropped to 23. No chemo and back in hospital for platelets and blood transfusions. Hate missing chemo.. Looks like new drug for platelets not working.
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My ONC told me that the steroids were making me gain the weight. She has reduced the dosage in half. Last week was the first time and will keep reduced moving forward. I definitely noticed a difference! Not wired the first 2 days and I am not as hungry
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Hi Bosco and kaayborg
Well my platelets came up and I got my second tx of Gezmar and Carbo. My MO has changed the way he wants me to get the tx;s/ I am going to get these two chemo's every three weeks?? I figure he is the MO he should know what he is doing. Hopefully with this much time between tx's my platelets will allow me to at least get the tx's with some regularity so I can find out if they are working. I wil say that the pain that I had in my back that seemed to be getting worse felt better yesterday after the tx and I did not need to take any pain pill when I went to bed. (pain is worse when I lay down)
Bosco sorry to hear you are in the hospital. That is certainly not what we want to do, right? Hope you will be home soon.
Rosieo
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Rosio, I am so glad to hear you've got a regular treatment plan in place and that your pain is lessening!!!!! My improvement on gem/carbo was sudden and dramatic. Pain gone and an incredible shrinking abdomen after the second treatment (I think). Not sure if you have distention or not. Liver enzymes back to normal after 3 cycles (6 treatments). May it be the same for you and may we all just stay that way for a long, long time. When it's tolerated gem/carbo can be very, very effective on liver mets, which is why, I am guessing your doctor is holding on to it by adjusting your schedule.
Bosco, feel well and get home soon. Praying for platelets!!!!! And for peace of mind on the crazy roller coaster.
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Well I no longer get to dance with NED. My dormant tumors have decided to get active again. The lung nodule went from 1.2 to 1.6 cm and a hiler lymphnode went from .7 mm to 1.0. Good news is no new mets!! And the other 3 I originally had are still gone. We are changing my chemo from Taxol to CMF. Anyone familiar with this? It is given once every 4 weeks. It will seem like a chemo holiday from the every week one week off Taxol. Oh...the bad SE is....wait for it....my hair will fall out! 😝. I can deal with that since I don't have any!
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Texasrose, so sorry to hear you are no longer NED. I do like your positive attitude, however. There is plenty good in your findings all things considered...keep focusing there. May CMF be good to you and may you enjoy your "chemo holiday"! Isn't it just funny the things we find ourselves grateful for?
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Thanks Kaaborg! Have to have a positive attitude or I think I would go crazy! Got to keep living life! I do have my pity parties that seem to come out of nowhere.....but luckily they don't last long
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Yes, yes. You've got that exactly right. And I completely know what you mean about those pity-parties too.
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Day 4 sure is a crappy day. Appetite gone. Having a hard time getting all the water down.
I asked the nurse how much water I need to drink. She said half your body weight in ounces.
Whoa!!!!!!!!!!!!!!! I weight at least 196 so that means at least 96 ounces of water :-)
I will never get it all down today. :=)
Hope everyone is having a good weekend with minimum se's
Rosieo
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Rosieo and Kaayborg - thanks for comments on platelets. I think the platelets would have come back without treatment and so does my haematologist so next time we're going to do a wait and see. Onc was in NY so no-one was around except registrar and he is always a bit panicky. Normally I'd argue but decided this wouldn't do any harm. Was finally discharged that night at 11pm as haematologist had authorised so I escaped a hospital breakfast. On water, I was told 8 glasses a day.
Then had a complete meltdown on Saturday - provoked by something trivial - a photo book of our wedding anniversary party which had hardly any photos of me and it made me feel like I was already a ghost. It all just got too much. My poor husband didn't know what was going on as I am normally v stoical. My mum died of cancer when I was 11 and she was in her 50's. I have worried the same would happen to me although I am now 18 months older than she was when she died. Work is just too busy. It was all just too much
Anyway, pity party behind me now. Paris events certainly help perspective. Treatment hopefully on Wed and then we are going to our home in Italy for the weekend for the olive harvest. Scans when I get back.
Texas I have had CMF about two years ago and my onc has it on his list as a possible future treatment. There is a well known specialist in London who recommended a 6 month course for me in 2013 and I was NED throughout. It was just after I had had my lumpectomy. As I remember it was easy to tolerate.
Good week to everyone.
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