IBC lounge: roll call, support and just a good place to hang out
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I'm so glad you're back sbelizabeth ! You are right, strep was dangerous ! I hope your strep is disappearing and your body will have a chance to recuperate good biotics after the onslaught of antibiotics !
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Yes, nice to have you back in the Lounge SB. And glad to hear that the strep infection is being managed. We certainly do live in an amazing medical era. As you've read, we're fighting a few fires around here right now and it's good to have a few folks chime in to spread advice and cheer.
Amarantha, your gnus is certainly better! You must feel somewhat relieved and I'm so glad your onc was positive. Obviously, the idea is to get the skin of the remaining breast cleared up for the mastectomy. How many chemo treatments do you have left?
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HI TT, two more chemo, and 12 more radiation are programmed. That's hardly anything ! we're over the hump.
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Amarantha I'm so happy to hear your good news! I hope the left side starts responding to treatment soon too.
SB ugh strep, hope you feel better soon. What a miserable time of the year to be sick (although there's never really a good time). Hope your weather has been as beautiful as mine, still in the 70s here and I'm truly enjoying it, but waiting to see what the "killer heat wave" brings later this week. I'm close to the beach so I have no a/c, if it gets too bad I shall spend all of my time in the pool hahaha! Might even have to whip up a frozen cocktail (I haven't had alcohol since my DX because I was on opioids!).
MoreShoes, are you oligometastatic? That's often a determining factor in treatment at Stage IV, as they typically still make an "attempt to cure" when oligometastic, but other factors come into play when mets are more extensive. Hope you get a treatment plan in place that you are comfortable with. Please keep us up to date, we're all pulling for you.
Waving hello to everyone else, hope you are all doing well!
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Amarantha, so happy for you!! Yay!
Sbelizabeth, hope you feel better soon...
LoriCA, waving back, I was a CA girl for 30 years, the picture you described lounging by the pool with a frozen cocktail in hand sure made me envious! Hope the heat wave is a mild one.
Moreshoes, hope you will get some good plans from Amsterdam. Please continue to press on! I read a little about Netherlands health care system, it sounds really good. There has to be other things they can try.
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Dear friends, thank you so much for your support and advice. I'd be lost without your collective knowledge and help. I've reread your messages before my appointment with the oncologist and it finally dawns on to me.
The plan of the oncologist, (and I agree with her) is: the spots in the lungs are very small, I don't have any symptoms yet, I found out about them quite by chance. So for the time being we don't do anything. I go on vacation, enjoy myself and at the end of August I have another scan. Depending on the results, I start with Xeloda. Amsterdam is doing trials with immunetherapy but I can't join yet, cause the spots are smaller than 1cm. In any case, I've an appointment with them to get more information about it.
I feel a kind of relief. There's still hope and I'll try to enjoy myself as much as I can. She asked me if I do want to continue with therapies. I told her, that two yeas ago, when the IBC came I thought that was the end. After the chemo's and DMX, I could still go to my son's graduation. Two days ago, I went to my daughter's graduation. So yes, I want to keep on trying being around as long as possible.
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Dear MoreShoes, YAY !!!! Thank you so much for this - you've made my day. YAY !!
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Great news, MoreShoes, that's a way better situation to be in. Enjoy your holiday.
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I'm so happy to hear that MoreShoes!
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You brought a HUGE smile to my face Moreshoes!! So glad the plan in place includes you being able to enjoy your summer
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MoreShoes, thanks for the clarity, and the hopefulness. Enjoy every moment of your lovely summer!
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Moreshoes enjoy your vacation. Enjoy life.
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Dear wonderful people, Perhaps the sudden cooler weather, easier to stand ? I have a feeling of just having turned the corner -- this is week four of my five weeks of cisplatin + radiation, the radiation doctor today though there was visible improvement even since last week in the breast. Suddenly so much more hopeful, and feeling really good. Happy to be in France, happy to have a zippy beat up little old car to drive, with fake screeching noise (from my lips) around corners. Happy to see the love in my husbands eyes. Happy with our little solar fountain in a blue basin. Happy with the little hoppy birds I've come to call my clients. Happy with the newly blooming flowers, some white hollyhocks, some red gladiolas, some pink cosmos coming out, white ones on the way, and magenta already. Turtledoves in the birthbath with the thirsty wasps. Some flowery tree blooming over the fence ... a good day. May we all continue to find joy from moment to moment.
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Oh, Amarantha...I can see it, hear it, feel it, all of it, through your words. Thanks for the lovely experience. SB
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So good to see you in good spirits Amarantha, and wonderful news that you are finally seeing some improvement. Hope things continue to go well for you! Your garden sounds absolutely wonderful, and I'm laughing at my vision of you making screeching noises as you drive around those street corners.
Just minor issues here - Silly me stopped taking gabapentin without telling my doctor when I stopped taking opiods, and apparently I have neuropathy issues that I didn't realize until recently. In fact that's why I wasn't getting much sleep the past couple months, as the pain meds left my system the burning in my feet was getting worse every day and keeping me up all night until I realized what it was. Back on gabapentin now, and this week we doubled my dose. My MO said that the hiking I plan to do in a few weeks is going to aggravate it, so we're trying to get on top of it now. The past few nights I've actually been able to sleep straight through the night, yay!!!!
And he thinks the pain, tenderness and severe cramping I've been experiencing in one rib is actually due to muscle spasms in my back caused by the bones healing. I knew it wasn't cracked because I had no problem breathing, but the pain was persisting for several weeks so I figured it was time to mention it given my bone mets. I'm supposed to try treating it with heat, but who wants to use a heating pad in the middle of summer?! He did offer to let me go back on the morphine but I'm trying to avoid that at all costs.
Other than those little things all is good here. Getting excited about taking a long-overdue and much needed vacation in nature, and have been working hard to build up my strength and stamina so I can enjoy it.
PS - If you don't usually scroll all the way down to the end of the page on the main forum, you probably haven't seen the new ribbon that TravelText posted in the Advocacy thread. I absolute love it, go check it out if you haven't yet seen it.
Hope everyone is doing well!
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amarantha, you're back to your lyrical best and I hope that the cancer keeps shrinking.
LoriCA, wow, that's a few issues. Glad that you are getting on top of them and that your holiday is still on. Too bad to miss meeting you in San Diego where I'll be for 12 days from Friday next weekat the Project Lead event.
Will post the latest version of the ribbon here.
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Here's the latest version of the ribbon. The text is not finalised.
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It's really just minor stuff TravelText, given how advanced my cancer is and the bad shape I was in just a few months ago. It takes more than that to keep me down. Healing is often painful too, but it's a pain I can be grateful for because it means that the treatment is working. I really do feel fantastic besides the little aches and pains. Most importantly I'm still alive and doing better every day when they never expected I would last this long! I'm back in the gym doing some light strength training with my doctor's blessing, swimming (although I had to modify my stroke due to the rib pain, I mostly swim on my back), can easily walk for several miles on flat ground and stairs/hills are getting a little easier. Six months ago it was still hard just to get showered and dressed every day hehe. Now that I'm sleeping again, I will continue to get better and stronger every day!
I am sorry that I am going to miss your visit. I hope we don't have another triple digit heat wave while you are here. It doesn't usually get that hot along the coast but phew it was bad last week!! I hope you have a great time while you are here and that you have a chance to see some of our beautiful coastline.
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Traveltext, I LOVE your ribbon, and will be happy to use it when you say it is finalised.
LoriCA, I am glad you consider the current tribulations to be "minor stuff" and that it takes more than that to keep you down. Your courage gives me courage ! Swimming is a blessing ! yes ! I wish to get back to swimming, love my local lake, but I guess will have to wait until rads and chemo are done. It is wonderfully encouraging to hear that you are feeling much better compared to six months ago, and to know that you are feeling better and stronger every day !
sbelizabeth, thank you so much for your kind words about words
It means so much to be able to read and be read here. Hugs to you.Traveltext again -- I feel the need to say how much I appreciate your participation here
I'm adding ... grappling with nausea today and yesterday, and I'm getting the idea that my last week - next week of chemo/rads is going to probably be the hardest of all, it seems the effect of the nausea is cumulative, and even all these combined mega drugs are starting to need ramping up.
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Amarantha, I'm so glad that the chemo works. I love your description of your garden. Congratulations on the World Championship!!
LoriCa, you give me hope with all the swimming, walking and going to the gym.
Traveltext, lovely ribbon. I'm not sure about the shadows of the text but maybe it's my screen.
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yay Moreshoes! So happy to read there is a plan after all. Smiles!
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Dancingdiva, good to hear from you again. There's been so much drama freearound here that I fear I didn't get to ask you how you were going. Are you still loathe to have any more Surgical treatment? Can you see a way out of your TE boobs? If you feel like it, give us an update.
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HI lovely people. I just have two more radiation sessions left, then on to the next thing. I saw the radiation doctor today. He is always trying to sober me - his byword is "I don't want to give you false hopes". He sees that there has been good progress in reducing the inflammatory cancer in the right breast, but is still not sure we will actually be able to operate. We may have done this all for nothing. I'm more optimistic somehow, I feel inside that this will happen. But it is true I will be very disappointed if it is deemed too dangerous. In any case it seems I had another case of "cheer up the doctor" today.
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Amarantha...you just totally crack me up. "Cheer up the doctor"! I'm thrilled you're optimistic, because you're the one inhabiting your body and receiving signals from within, not Dr. Downer. My own onc radiologist was a doom/gloom kinda guy--"we're not out of the woods yet," he announced, when it looked like my treatment was going well.
May those radiation rays vaporize the cancer cells like a bug zapper kills mosquitoes. SB
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Thanks sbelizabeth ! he said the rays ought to work a little like a weed killer, a little bit on the weed on thursday, no reaction on friday, saturday, sunday, and then all of a sudden - where'd the plant go ?
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Well, I made it to San Diego and have started the NBCC Project Lead course along with 42 women and one other guy, my mets pal Kirby Lewis from West Virginia. We have five more days of lectures that really concentrate on the science of our disease. Will post some more, but good luck to all those currently in treatment and best wishes to all here.
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TT, Is that you in the picture ? I'm impressed by your engagement and kindness. I do wish I had been there to hear the lectures.
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Thanks amarantha. That’s not me, I’m here to listen and learn. However, I’m asking some tricky questions of this group, since they are the ones that ten years ago set the goal of finding a cure by 2020. Most people thought this was bit ambitious.
This is me and my question that was posted on Twitter.
Q. Could NBCC focus more on treatment for Stage IV BC people rather than just prevention?
A. We believe we are on the right trajectory and have done more for metastatic people than any other breast cancer charity.
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Oh fabulous ! so happy to see a picture of you in action. Great question !
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NBCC Project Lead 2018 is winding up in San Diego today. I've had six incredible days of learning with 42 people, including 8 strong mets survivors (Victoria and Chiara are shown here), 10 dynamic Black women, and one other man. We all have one goal, to advocate for those living with all stages of breast cancer.
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