IBC lounge: roll call, support and just a good place to hang out
Comments
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Amarantha, I wish I were an artist and could draw a picture of what I'm imagining of the ancient, haunted house. I love history, and I really love historical family tales. By all means, hijack the tractor and clear out the weeds! Pack a picnic and pajamas and take lots and lots of photos for us. That way we can all go with you. SB
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SB hahaha! Whenever someone asks where I live I make sure to point out that I'm a transplant! We can't wait to make our escape from Babylon. When my husband was following me around the country in support of my corporate career he said he would follow me anywhere except California. Sure enough, the "big" promotion landed me in California and here we are. Five years later I quit the corporate job and in some ways he's never forgiven me for stranding him here haha! We're just trying to figure out where to go from here - we have no desire to move back to the east coast where our families are, we've lived all over the country and really have no one place we consider "home". I think that's why he wants to do the RV life.
Congrats on getting out of here and on your retirement, your next phase in life sounds wonderful. Colorado is a beautiful state and I'm sure it will be good to be close to family.
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Hi! I was on vacation for three weeks with hardly wifi. Lots of fun, lots of sun, lots of family time. This week I had a second scan and today I got the results: one spot grew from 7mm to 8mm, one became smaller from 3mm to 2mm, one is the same and one disappeared. The oncologist doesn't want to start with therapy, just ordered a new scan after three months. Monday I go to Amsterdam for getting information about experimenting with nivolumab and cisplatin.
In the meantime, I cut down the sugar intake, no alcohol, hardly eat meat, and I'm drinking black seed oil. I don't know what and if it helps but I'm willing to try everything.
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Amarantha, good luck with the decision making. I can see why you want only the mastectomy. Hopefully you can relax till Tuesday.
Meadow, you look great!
SB, enjoy your retirement. All the changes sound exciting.0 -
Nice to hear from Amarantha and MoreShoes. I used to think that no news was good news on this thread, but the silence from you two tested that!
Amarantha, I like Option 2 as well. Keep pushing for want you want. Don't let the plastic surgeons butcher you for their professional advancement. Let us know what the medical team suggests. And don't play around with the ghosts, let them lie.
MoreShoes, Good to hear that you had some fun. And good news, really, re the scan results. Slow-growing and/or receding tutors is what everyone wants to hear. Hope you can get on the combination nivolumab and cisplatin, since they have the reputation for being very effective.
Lori, no place to consider home, means you can go anywhere. How liberating. SB, Colorado sounds like an interesting state. Which city?
Fran, where are you at with your treatment?
All good with me, just getting ready to hit up Pinktober with some spectacular Twitter bombs!
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Traveltext, we are moving to Colorado Springs. Coincidentally, it's the city where I grew up, and our new home will be about 5 miles from the old house where I grew up--before I began my wild wanderings and career. The back deck of our new home faces Pikes Peak. I intend to sit on the deck with a hot mug of coffee every morning and watch the mountains glow from the sunrise behind me.
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Don't know how I missed seeing Amarantha's reply unless we both hit the Submit button at the same time. I love those old abandoned homes, I will gladly come sit by the fire with you! Can't say I blame you for not wanting to do the skin graft, the thought of it always freaked me out and it causes additional complications, but with IBC it is understandable that they might want to remove the skin because of skin involvement. None of this stuff is any fun. Hope you and your doctors agree on a plan that you are comfortable with.
Good luck in Amsterdam MoreShoes! What is black seed oil?
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Lori, black seed oil is oil from the seeds of the Nigella Sativa flower. Like I said, I have no idea if it helps but I'm willing to try anything.
After three times chemo and before more chemical stuff, I give the natural oils a go. Cutting down sugar helped me lose 2 kilos. It's not a lot, but I'm doing my best to get in good shape. According to the oncologist, that will be useful for when I go later to xeloda.
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I could've sworn I responded yesterday but now my post is gone. Not the first time that's happened to me.
Anyway, after reading about it I can see why you're giving it a try MoreShoes. Looks like there have been several promising studies with mice, but none done with humans yet. It's off the table for me though, with liver mets I am trying to stay away from things that would put more stress on my liver and black seed oil seems to have an impact on kidneys and livers at high doses (at least in mice).
I understand completely about wanting to try natural remedies before going with more chemicals after three rounds of chemo.
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Hello to everyone.
I've been busy fighting my bout with knee pain, and the birth of my first grand daughter. I've been helping my daughter daily. It really has helped me mentally and physically. She is two weeks old today. It's my youngest daughters first child. What a joy.
For those battling treatment and the after effects my thoughts are with you.
Val
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Lori, all these studies on mice need to convert to studies on humans before I take any notice. As soon as I see that the results of a new study are still at the mouse stage, my eyes glaze over. You're weaving an interesting and informed track through your treatment and good on you for taking this approach to what is undoubetedly a tricky path with your TN status. I always look forward to your posts
Val, what a distraction to your ailments your new grand daughter must be. And how good is it that you can help your daughter out.
MoreShoes, weight loss is important, so good on you for losing those kilos. Do you have a treatment plan yet?
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I think you are getting me and MoreShoes mixed up TravelText haha, she is TN, I am HER2+ so we are on completely different paths.
Yes I agree completely about the mouse studies and all of the hype over them, especially when they call something miraculous and a game changer!! We are not mice, and it saddens me to see people get all excited over some mouse study. My comment about the mouse studies was in reference to some of the info I found when I started researching Nigella Sativa (black seed oil) after MoreShoes mentioned it. Seems it is folk medicine that has been used for hundreds of years in Asia, Africa, Middle East, etc. I think that folk medicines which show good results in mice are worth proceeding with trials on humans, because I think we would all prefer something natural over these toxic chemical mixes injected into our bodies. But Taxol is derived from the bark of the yew tree, and by the time we get it, it is far from a natural substance, so that's wishful thinking on my part. Anyway, given that it's been used for centuries as traditional medicine and there are positive mouse studies, I can understand why MoreShoes is giving it a try. As long as it doesn't have harmful side effects I wouldn't have a problem trying it in addition to (not instead of) more traditional treatments, but I personally tend to fall into your camp and not take notice until there have been successful trials on humans.
Congrats on the new grandbaby Val, have fun spoiling her rotten!
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Lori, Sorry about the diagnosis mixup. Actually, Val and Amarantha are also TN. It so often is the gene expression for IBC.
One thing I had drummed into me at the course is that evidenced-based treatment is preferred. This often means pharmaceuticals that have gone through rigorous testing but can include complementary supplements. One thing, though, is that patients benefit from many non-tested products during cancer treatments because they work for them. MoreShoes, you are trying lots of alternative things, so I'd suggest keeping a diary and reporting back here as to what worked and what didn't.
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No worries at all, HER2+ is only about 20% of all BC so I'm used to being the odd one out hahaha!
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Lori and Traveltext, I agree wholeheartedly with you. But, I've done the conventional therapies. Now I have to wait for 3 months for the next scan. I can try something else in the meantime, hoping it works. In any case, I lose weight, get stronger and my skin looks great. I do have to be careful because as Lori said, the black seed oil affects the liver and the kidneys.
Amarantha, what did you decide?
Val, congratulations on the granddaughter!
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Hey Meadow and friends,i am so happy on your 5 years,if you remember we both started this journey 5 years ago August 2013,i am happy to say i am also NED.i just had my Mammo CT and Ulta sound...ALL CLEAR.My oncologist ( he is such a darling ) does not want to see me again unless i have some freshly made cookies for him...ha ha.
Love Jess..
Yesterday is history.
Tomorrow is a mystery.
Today is a gift.
Thats why we call it the present.
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Hello friends, it is so nice to find you here, the door open, the bar being tended ... I still have nothing to report. My surgeon called on Friday to say since people were out of town, the meeting about me was postponed to next Monday. He'll call after that to let me know "which sauce I will be eaten with" (a French expression !).
Congratulations to jessozzie for being NED ! It is nice to know such a thing can happen. Would you make cookies for your oncologist ? (Chocolate chip ?)
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Okayyyyyyyy ! finally a decision from the doctors !! Yay the waiting for an answer is over. So they have agreed we will do a simple mastectomy and not mess with the left side. The surgeon offered the 22nd of September which would allow me to do some traveling and opera reviewing before hand. After the surgery eventually, I will go back to Halaven (Eribulen). Whew !
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Woohoo Amarantha. A bit over two weeks of fun and work before the op. Go for it.
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Glad to hear that you got a surgery date Amarantha. Enjoy your travels until then!
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It's been one year since my Stage IV de novo diagnosis when my doctor gave me 60 days live because the cancer was spreading so fast. I'm still here and doing well, so that's cause for celebration!!
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Yay !! LoriCA, congratulations !!!
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Wonderful news Lori. Congratulations.
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Big smiles and hugs to Lori!!! Wahoo you go girl!!!
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Hello, friends! I'm back from my wanderings in Portland, and as Amarantha says, happy to see you here, the door open, and the bar tended! Lori, what a fantastic anniversary to celebrate. Amarantha, YAY for the decision to go for the mastectomy, and blessings as you and your team figure out what's next. With summer waning I would imagine the opera would be busy and traveling cooler and more comfortable. Meadow, Valstim, MoreShoes, Traveltext, Jessozzie, Fran...keeping the band together! Happy Thursday, everyone!
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Oh Lori, that's wonderful! Enjoy your anniversary.
Amarantha, what a relief to have a plan. Have fun treaveling the next weeks.
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Hi All,
OK onto plan #4- went to the new onco yesterday afternoon and boy that turned out not like expected! She definitely believes I have run my course on Kadcyla and needs to switch things up asap. After looking into it, there is no available slots on the clinical trial for Neratinib (for stage 4) for right now but she wanted to put me on something asap. So.... I returned to Herceptin and added Navelbine this time & hoping to kick these misbehaving lymph nodes back into shape. Oh... and guess what, the swelling and pain in my arm that I've been experiencing is being caused by a freakin blood clot in an area around my port and lymph node (yep, it's all intertwined in there!). So... not only did I get my new treatment but also an injection in my stomach for blood thinning and I'm put on an oral blood thinner 2x per day. Fun times!! NOT!!!!!!!!! Just laying low today as my body and mind are just plain beat up!!!!! Hope everyone is having a better weekend
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Sorry to hear about these latest developments Fran. Haven't heard about Navelbine. Certainly Herceptin should do the job. Hopinga trial slot comes up for you
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Wow, Fran ! Wow. I'm just really glad they caught the clot, and are doing something actively for you instead of the miserable same old "wait and see" thing.
I hope you feel better soon and that things improve rapidly !
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Fran, too bad about the clot! Hopefully the blood thinners will get it sorted very soon. I was on navelbine, along with xeloda, after rads. Both were tolerable. Get those lymph nodes to behave!
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