Best Of
Re: newly diagnosed invasive ductal carcinoma case
Hey. Just thought I'd toss in my 2 cents. I waited and weighed all the details before deciding on which surgery (took me 6 months...). Looking back (I'm about 9 months post-lumpectomy and chemo), I feel like ultimately the decision of which surgery is really about how much you wanna look over your shoulder in the years to come. Chances of recurrence change based on sooooo many factors, and ultimately none of it is a guarantee. Maybe others have had a different experience, but for me, every itch, twitch, random pain, side effects from the chemo…(and the meds thereafter) makes me assume the worst. I often wonder if the mastectomy would've just given me one less thing to be paranoid about... then perhaps I'd have a good night's sleep (which i haven't had in probably 6 months or more dealing with meds side effects). I hope you find the right path for you.
ejohnnie
Re: Are you currently (or have you been) in a Clinical Trial?
Dear cureious, yes, our "baby" is turning 11 years old in two months, is 150 cm tall, living a life of a young careless happy boy, having his healthy mother by his side, isn't it amazing?
So, we are from Lithuania, a beautiful little country with really good health care system. My Sandra was in no trial - after de novo diagnosis and very dire situation she started THP (aka Cleopatra) protocol on August 27th 2017 at our National Cancer Institute. I also asked a few doctors "what else can we do" and one doctor from immunology department said "you could also try dendritic cell vaccine and cytokine induced killers (CIKs)". After already knowing what MBC diagnosis with liver full of mets means, we went directly for it. They took her blood after 1st THP infusion (we were in real hurry, as after 2nd THP infusion her blood numbers went really bad), and it took ~5 weeks to prepare the DC vaccine (everything is done here locally by one bio-tech company, they managed to make 8 doses) and CIKs. She really was a hero to go through 12 Taxotere-HP infusions and, to everyone's big surprise, got to NED in May 2018. Then right away, she was taken off Taxotere and left only with HP, and started DCs in addition. 3 shots with 2.5 mio, then 5 and 5 mio cells were administered weekly, then two more were administered in July and August respectively, these ones with stimulating alpha and gamma interferon. The 6th dose was given in December together with first CIK dose (1 billion cells), then 2nd CIK dose at the end of December, and third - in the beginning of January. She then had a relapse in January, but again to everyone's big surprise, in the same breast only. Went back to THP again (6 cycles). Everything was very well choreographed, and she never skipped HP/THP infusions. In June 2019 she got 7th DC vaccine dose. Then in July got a mastectomy without LN resection, as there were no signs of LN involvement at that time. Then in October she got her 8th (and last) DC vaccine, and in January 2020 - 4th (last) CIK dose. Then in 2021 through ultrasound they have noticed 3-6 LNs in her left side (same side as mastectomy) and performed a surgery to remove them, removed only 3, others were cyberkifed. A long story but… after December 2021 till today we had no more issues at all. She's NED in all her body. Last week she got her 142nd HP infusion, gets a thorough ultrasound every 3 months and chest CT scan+liver MRI every 6 months. Things have changed for us so much that our MO does not even see us, prescribes several Phesgos in advance and these Phesgo boxes that cost so much, lay in our fridge on one shelf together the eggs:)) She feels absolutely healthy: works full time, exercises two-three times a week, meets friends, participates everywhere where she wants, sleeps in tents, swims in lakes and the sea in summer, etc., and apart from some skin-issues (which happens when you are on HP for so long), I'd say her QoL is 100%. So this is our story…
For the end I wanted to share a few photos with you:
In our cancer journey went from this:
To this:
To this:
And to this…
And when I see these photos, when I see and hold them every day in my arms, I understand that every moment of my life, every struggle, every sleepless night, every tear and pain… was worth it. And that the future is not guaranteed for us but… there's always hope.
Your Saulius
bsandra
Re: My Husband, My Life, My Love, My Family, My Cancer
I would leave it to just allow brother but unsure how to allow calls from hospital as well. I also have the lifeline people coming so I will see what happens there.
Re: Birads 5 with calcification
@moderators thanks so much for your condolences and great advice. I actually mentioned it to them today at my chemo appointment. 2 of the nurses there put $250 on a Christmas card and gave it to me at the end of treatment. If was unexpected. It’s hard for me to physically accept anything from individual people, I’m so appreciative.
Re: Bone Mets Thread
@xsuzx That wild ride can sure feel like a bucking bronco at times, but hopefully it will settle down into a peaceful mare in the field soon.
Re: My Husband, My Life, My Love, My Family, My Cancer
So the Kraft Dinner Meal was good, it did featured frozen riced veggies, sour cream instead of milk and butter and put in the cheese powder right away. Added some sour cream and onion seasoning and some garlic spread. It did get stirred every once in a while and stayed on the burner with a lid. I must say this was a super creamy dish and it was really enjoyable to me. No shredded cheese as not much left in fridge but will pull some from the freezer. I found it quite delicious. There is a lot left over, think I may toast english muffin with butter and add as a side to the pasta, I will see.
Re: Bone Mets Thread
so this is all getting quite real for me now. Dr called for me to make appointment with Pain management Dr. and radiation consult. I just made my appointments. They did a genetic testing blood test last week. And I am on my tamoxifen. Still taking pain meds ( Dilaudid) every 6 hours. I guess this wild ride is beginning.
xsuzx
Re: My Husband, My Life, My Love, My Family, My Cancer
I will see, best bet is to leave phone on, until everything is done as the hospital may call so need phone open, I will survive. Don't want people to think I am dead, DB was knocking on my door half an hour and I cannot hear stuff with rain sounds going. Will wait til brain is done before go back to normal.
Re: My Husband, My Life, My Love, My Family, My Cancer
OMG, My brother came into my bedroom startling me awake, he genuinely thought something happened. I do not keep my phone on overnight so the neurosurgeon office called and then called older brother since yesterday, said he thought I was dead. Got up to learn need to start having scans so CT scan tomorrow then in the coming days will be booked for MRI and consultation. Luckily could get an appointment for CT tomorrow at 4pm and called Paratransit, they are able to take me to that hospital. I don't know my way around that particular hospital but will figure it out. It is too bad hospital called so early because phone is not kept on at night normally. Finally some movement on this brain cyst. Apparently he thought I was dead as he banged on my door for 1/2 an hour. Poor guy. I will leave phone on overnight so can receive calls. Once the brain nonsense is over, will go back to do not disturb and listening to rain or leave phone on and listen to rain anyway.
Not sure about meals today, probably do up some crispy lentils and beef, pulled out a pound of ground beef, if thawed in fridge from last night, will cut in 4 pieces to go with other stuff I make. All sound yummy to me. I still have the KD and riced veggies mix leftovers so they could furnish a mean for me as well and pulled out cheese too. I will see what I decide to have, something in the air fryer for sure. Other than that, burritos would be a quick and really good thing to have.
Laundry going now, My SIL was going to come over to help clean it, told her do not need that to happen as my toilet is clean, just have lots of spray for the toilet bowl to clean it all the time. Oh well.
Hope everyone has a good day, in pockets for all, in own pocket to figure out how to get around a new hospital.
Re: So...whats for dinner?
@wallycat My heart hurts over the pain of your DH and your tears. I will surround you with virtual hugs.
I have slowed my gift giving to miniscule amounts focusing on the grandchildren and a small gift here and there. It is too much stress for me with everything else I go through daily. I think everyone understands. If they don't, it's on them.
