Starting Chemo May 2019
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so glad to see everyone moving forward... for me 3rd time is a charm I guess... I had my 3rd lumpectomy last week and I just got the call from my surgeon "no residual cancer found in tissue removed", it was shocking especially after I was denied to have reduction at same time because of prior nuclear margins ... I always hope for the best, but always prepare for the worst as well. Still waiting on PET preauth..
So now I continue with Rads and a year of infusions with Target/Immuniology.
I will continue healing prayers and postive vibes for everyone...
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hey May family ❤️ I’m glad to see everyone is rocking and rolling right along to recovery. It warms my heart! I’ve been lurking the last couple of weeks... I’ve had a lot to deal with. On top of the cancerous node they found while doing my BMx, my 13 year old English bulldog passed away last week from heart failure. I’ve been an emotional mess. That dog has been by my side through so much. It is a tough loss.
Yesterday, I went to my PS for my post-op visit. I now have 3 of the 4 drains out. Yay! He gave me some exercises for my arm and shoulder. With the axillary node dissection, my underarm is quite tender and I have some pain shoot down my arm when i reach out or up. Hopefully I can get that worked out.
Today, I went for my SO post-op. He said pathology found a few more nodes had cells. Not the macro or micro tumors like he mentioned before, just some individual cells. He recommends radiation now. Honestly, I’m kind of tired with dealing with this. I really thought I’d have chemo, have surgery and not have to think about any more treatment. I just want all this to be over. I may look into some alternative therapies instead. Sigh. Sorry to be a downer, but I think I’m emotionally tapped out right now.
Each and every one of you are in my thoughts and prayers
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Palmetto, I'm sorry about the passing of your bulldog. That's hard to process, especially now. My docs want me to have radiation, too. I asked my case manager with the insurance company what her opinion is. She agreed with everyone else. If all goes well, I can start radiation mid December. I want to wait until after the first of the year, though. I need a break. I want to spend Christmas contemplating the season and celebrating with my family.
My drains came out today. Although they weren't too bothersome, I'm glad they're gone. I start my fills next week. That should be interesting.
I visit my BS tomorrow. I'm going to ask for a referral for PT. My arm is swollen. It doesn't hurt, but is uncomfortable.
I choose to look at all of the procedures as modern wonders. It's all pretty trippy. I am content with my progress.
Although I am not addressing each of you individually, please know that I care for you. I'm just a little tired.
Love you all!
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palmetto of course you are tapped-- anyone would be. Especially if you had paced yourself to be 'done' and now, and it might not quite be done.
If you have to do rads, it is not nearly the ordeal chemo is. It's not time consuming either. It's a 20 minute appointment 5 x a week and only about a month. I did 28 rads and it was not difficult except the very end when my skin was reacting and I had fatigue. I was nearly completely healed in about 10 days after my last rads. If necessary, you can do it. .I was really nervous about rads. I got proton radiation which has fewer unintended exposure side effects, and that made me less nervous. In my case the rads were compulsory as I only had a LX.
Alternative therapy that I have tried (and highly recommend) is High dose Vitamin C IVs. Also Hyperbaric oxygen. I did the HBOxygen first then the IV C. This is a great stem cell killer with low impact on healthy cells. A good naturopathic physician should be able to provide that.
It's a bummer treatment is such an ordeal! It's a marathon!
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palmetto.. so sorry to hear about the loss of your bulldog. The loss of a such a dear companion is hard at any time of life, but in the middle of all this it's got to be especially tough.
I really thought I'd be done after my mastectomy too (it's Friday). I am very thankful to my BS who finally told me rads are highly likely. When I first heard this I felt very deflated, just when you think you're coming to the end... ugh... I'm sorry. But after rads is there anything else? That's what I keep telling myself. I mean THAT has to be the end of the surprises right? Did they take your port out? I know you weren't sure what was happening with that. How are you feeling???
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Hello everyone! I think I read somewhere that if you have a mastectomy, you usually don't have to do radiation, so I understand that y'all are surprised by it. I was supposed to start yesterday, but when I arrived, my RO was very apologetic that my "bag" had somehow gotten a hole in it and deflated, and we had to start all over with the set up appt to make another one. So now, I'm starting on Thursday or Friday; they are rushing on making the new one. I think everyone in the building apologized to me; they were terribly embarrassed and said this never happens. It didn't make a big deal to me one way or the other, so I didn't understand why they were so apologetic. Maybe now they'll feel obligated to treat me like a queen! Although I think most centers do this anyway.
April, they took my port out during my surgery. I was SO happy to get that out of me! After rads, the next stage for me is the prescription I'll take for 10 years.
Palmetto, so sorry about the loss of your beloved pet. That is so hard to deal with, especially at this time. Praying that you can handle this added stress. I was worried about rads, too, even though everyone was saying it was easy. At my first setup and run through, it really was easy. I have to do breath holds for both left and right but it's only about 10 seconds each time. I'm counting down the days until I can stop going to drs every other day!
Happy, I didn't realize that the swelling could happen this quickly. I am watching carefully for it. I assume you will start radiation soon, too? I had to wait until I could put both arms over my head, then I was ready.
Take care. Love hearing from all of you.
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Palmetto, I am so sorry for the loss of your bulldog. What a devastating thing to have to go through! May he run free!! Also bummer about the remaining cells. But, this is not the end of the world. Please don't give up after all you have come through! Take a break, regroup and then keep on getting this done. With the BMX you have already taken your risk for future BC events way down, now you just have to kill those last remaining cells.
Happy, sorry to hear about your swollen arm. PT is a good idea in any case.
Lots of love to our amazing May group!
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palmetto (and everyone)--
As a followup to active treatment, you may want to ask about things like Metformin and Melatonin. Both very anti-cancer. The cancer-therapeutic dose of melatonin (an over-the-counter sleep aid, a natural substance produced by the body) is 20 mg, taken at the same time of night every night. It helps stabilize your circadian rhythm. You work up to 20mg... start at 2.5 or 5 mg, and see how you tolerate it, adding another 2.5-5 mg every several days as you are used to the prior amount. You take it about 30 mins before you want to fall asleep when you are reading or whatever in bed.
Metformin is a blood sugar drug, and is something my MO gave me upon request. My glucose was at the higher end of normal (96) prior to metformin, but I have felt no ill effects on 1000 mg a day (500 am & 500 pm). My glucose is still about 90 s it has not been much affected. These are two cheap, available drugs that show a lot of anti cancer activity.
The book "How to starve cancer" has a lot of suggestions that are worthwhile. The book "Life Over Cancer' was written by the integrative MO I consulted with. Both are valuable as guides.
There are many supplements that are cheap and available that have sidebar activities which discourage the growth of cancer. Curcumin is a biggie, berberine (which partly mimics metformin), ashwaghanda, quercetin and many others that you can read about. Each of these substances has a way of thwarting cancer by blocking a pathway by which cancer stem cells fuel themselves. If you block a bunch of pathways at once, the cancer can't feed or grow.
I mention this because, of course, all of us are at risk for recurrence. Something about our body, inflammation, etc allowed cancer to grow initially. Now, it's a good idea to make ourselves as "cancer-unfriendly" as we can.
The validated things that correlate with less recurrence: 30-60 mins of daily exercise (3.5 hours-6 hours per week), low fat diet (<20% of calories), pescatarian/vegan 'whole foods' as bulk of diet, and keeping animal foods low.
Wishing all of you many years of good health and thriving!!
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hi all! Another lurker here.
HappyAnyway, Palmetto, April, I totally understand how you feel about rads, esp. if you expected the active treatment to end with the surgery. But rads are doable, yes, daily treatments are a bore, but as santabarbarian said, the appointment itself is 20 - 25 min, and the SEs are manageable.
I have not posted much in the last days... I have been dealing with yet another flare up of lymphedema in my hand. It got better now, but accepting the fact that I have to deal with the darn thing daily, for the rest of my life, is difficult. Thankfully, my case is mild, grade 1, and can be controlled, but controlling it means daily routine of self massages, weekly visits to PT and - oh, yes - compression garments. I will be OK, but the last few days were an emotional struggle.
Keeping you all in my thoughts and prayers, please be well
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HappyAnyway, I do hope that your swollen arm is not lymphedema, please let us know what your PS and PT have to say
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BAMR and mightlybird01, the nurse that removed my drains mentioned PT. I brought it up to my BS today. He acknowledged the swelling near the site where my sentinel node was removed, but said it's not bad and doesn't require treatment. I'm going to mention it to my PS when I get my fill next week. I'm healing well, but bothered by the swelling under and on the back of my arm. If PT will expedite the healing process, I'm all for it. I hope to postpone rads until January.
Hugs to you, LaCombattante. This whole process is daunting.
My appointment with the BS went well today. Although I didn't achieve a pCR, I have no evidence of disease. He said that my wounds are healing well and will only get better. I told him that my boobs look like a teenager and my nipples look like they've fed three babies. He smiled. Lol
Keep up the fight, friends. You are each strong and capable. Cue the Rocky theme song.
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Hi All,
Hope you all are recovering from surgery well. I haven't posted in a long time as i have been devastated from my pathological reports. Residual tumor + 3 nodes still positive. I had another surgery for axillary dissection. I have to do 1 more year of chemo. I am falling apart. Take care everyone. Hugs.
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Oh neeli, I understand your devastation. Actually, reading the posts after mine last night, I realize that many of you understand my/our exhaustion, misgivings and disappointments. It sucks, but at the same time, I am grateful to have you all to vent to. I vented to my parents last night and made them upset. They don’t get it, but y’all do.
Keep fighting, neeli. Take a break if you must. (Thank you all who helped me see that). We are here for you.
Happy- I’m sorry to hear of the swelling. I have the same (and now chafed underarms-ouch!) and have noticed that a pain shoots down my arm when I try to stretch my arm above my head. I will ask BS what I should do. LaCombattante- I sincerely hope you find relief from the lymphedema.
Santabarbarian- thank you for the info on alternative therapies. I will check out those books. I had already considered the Vitamin C IVs, but I had a feeling there was more I could do.
Many thanks to you all for helping me recenter myself.
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Palmetto, HappyAnyway, after my surgeries I was advised by my medical team to stretch two-three times a day. Here is a helpful link:
Neeli, sorry to hear about the path findings, no wonder you feel that way. It sucks that you have to have more chemo after being in treatment for nearly half a year already. But trust me, it will get better. One day at a time, one foot in front of the other.
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For those with lymphedema, if you can find a LE qualified physical therapist, you might get better quality help. Here's a link to a list of qualified PTs. You can search by your city or zip code.
https://www.clt-lana.org/search/therapists/.html
I had bad cording after my lumpectomy and lymph incision. The BS said it was about the worst she'd ever seen. I got a PT referral. I didn't use a LANA/LE qualified PT, but I got good advice and some exercises to do at home. It helped me pretty immediately and right now I don't have any issues with either cording or swelling.
And at my BS follow-up appt on Monday, she said to be sure to let them know if I have swelling, so it can be addressed quickly.
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Mtnmia. Great info on lymphedema. Thank you. We had information overload the last 2 days.
Lacombattante stretching post surgery is very important. We have easy ones for now and more intense ones starting tomorrow. 10 days post op. We had drains removed Tuesday.
Palmetto so sorry about your bull dog. We lost our old English bulldog a year ago. I loved him more than most people. Your next course of treatment will do wonders. This group is a a great place to get advice, vent and regroup.
Neeli you hang tough. Things have advanced so much and you are on the right track.
Happyanyway keep an eye on that arm, Lacombattante ‘s advice on self remedies for that could be helpful. Also sounds like rads will be a walk in the park for you and the final result will be cPR
Well we got hugged, patted on the head, congratulated and sent home. Not to return for 3 months except to set up ovary surgery in February. They said we could do surgery soon but We need the break so we’ll enjoy the holidays then get back to it. BAMBR was correct, due to tumor size, DMX and no nodal involvement we were not candidates for rads. Being TNBC we then are basically done😳. FYI our Naturalpath recommended based off sound evidence to take a dose dense green tea and curcumin supplement! Also research has shown great benefits in TNBC to consume organic soy milk, tofu or edamame daily. So we will do all those things. Now we are going to heal her sore chest, grow some hair, eyelashes and new nerves in her toes!! Oh and hang out with grandkids!!!
April praying for tomorrow’s surgery. God bless and keep us posted.
Thinking and praying for everyone, Britt, UpstateNYer, santabarbarian, G1973 , Katiekins and Mightlybird etc...
Jay
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Yesterday I had my reduction/symmetry surgery for my healthy breast. It went well, as far as I know! I'm in a snug post-surgery bra, basically a binder, with a lot of gauze underneath. I took kind of a long time in recovery, had a little nausea that was basically motion sickness, but no vomiting. Other than that I was groggy the rest of the day. My range of motion is not limited at all. My chest is achy today but manageable with tylenol and ibuprofen. They sent me home with oxycodone, but I doubt I'll use it.
This isn't going to make my breasts like a 20-year-old's. It wasn't a lift, so I will still be my saggy old-woman self! But it should give me better symmetry and that's what I am hoping for.
I could shower later today but think I will wait until the morning. I'm pretty surprised by the lack of restrictions in my home instructions. Just stay in a sports bra 24/7 for a couple of weeks, and pay attention that there isn't any infection going. I won't go back to weight-lifting until after Thanksgiving, probably, but I can do about anything else, I think.
Today I'm pretty tired and looking forward to a good nap after lunch. In the meantime I'm doing some quilting stuff.
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Mtnnia. That sounds extremely successful!! Congratulations. Ya take it easy and gradually get back to weights!! Having a wonderful thanksgiving. We are heading to Albuquerque to see our son and his 4 kids. Super excited!!
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MountainMia, happy to hear that the surgery went so well. Full range of motion day after - wow!
April, good luck tomorrow! I will be praying for you.
Jrominger, good to hear from you. Congratulations to Nat on finishing the treatment.
May gang, you are all in my thoughts and prayers
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Dang it, neeli, I am so sorry that you have another year of chemo. Keep posting if it helps. I haven't been on as much lately, but I'm not going anywhere. I still have rads and reconstruction. I'll likely have reconstruction in August, maybe later. Blech.
Palmetto, I'm stuffing wash clothes under my bra beneath my arms. Sure looks sexy. It helps a little. Of course the bottom of my bra rests on my sutures. I may stuff that area, too. My arm doesn't hurt unless I press on the swelling, then it feels sore. I hope you feel better soon.
Santabarbarian, LaCombattante and MountainMia, thank you for sharing tips and helpful information.
Jrominger, I bet Nat is thrilled to be rid of the drains! Thank you for sharing tips, too. I'm ready for Thanksgiving! I usually host and do the majority of the cooking, but am thinking about ordering a pre-cooked full spread this year.
MountainMia, I'm happy for you! Hope you only need monitoring now. I'm excited because I won't see my BS for 6 months. I visit my MO next week. Of course I'll be seeing a lot of my PS. Maybe I should say he'll be seeing a lot of me!
Hi LaCombattante! I giggled the other day when I read your response to someone's insurance issues. You and I would be a good team to fight those greedy companies (really want to cuss, but will refrain). I have a couple of appeals to file myself. How's your hand?
April0315, sending healing thoughts as you approach surgery. I'm looking forward to hearing from you afterwards once you are up to it.
Best to all!
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lacombattante it seems so surreal. We were doing chemo, surgery, dozens of appointments and then boom it just ended. It is a blessing from God but just like that we’re done!! I was planning on rads The Who knows what else but by God’s Grace here we are done and healing from surgery. I will have to keep really busy to keep my mind off of it and not bug Natalie about how she is feeling. On a weird note all of Nat’s eyelashes fell out last week!!! She had most of them throughout chemo then she lost them 5 weeks pfc!! She wasn’t pleased to say the least! Hope all is just getting better and better over the pond.
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Jay, my lashes and brows did that, too. I thought I'd get to keep them, but about a month after last chemo they all came out. Probably hers will grow back in quickly, if they do that like mine.
If she loses her eyebrows and wants to draw them on with make-up, let me know. I bought some fabulous brow powder that works really well. I'm not much of a make-up gal, but it made me feel more normal. Funny, though, is I started drawing on eyebrows the same time I quit wearing hats and scarves to cover my baldness.
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Hello group, got my drains removed today, 6 days after surgery. I always liked my small breasts but who would have known that this fact comes in handy when you have one of them removed (i.e. less tissue, less trauma, less draining). What a relieve. I still have my postop on Tuesday, when the surgeon herself will remove the remaining plasters. The nurse who removed the drains said that today was tumor conference and she thinks my Dr. has my pathology report already (tumor conference is every Thursday). She was in surgery when I was there, so I could not talk to her. So I may get a phone call tonight. I am nervous to say the least!
I am feeling fine otherwise. There is a bit of swelling right next to the arm pit, but I have no pain and I think full range of motion, although I was instructed not to move my arm too much until the 11 days after surgery. Somehow this his something to do with micro-friction which is not a good thing when wounds are healing. So I do only breathing exercises at the moment, and only use my arm very gently. I still don't reach above my head, even though I think I could easily do it.
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Hi mightybird. I'm glad to hear you're doing well.
I also wanted to mention for everyone, I had my follow-up with the BS who did my lumpectomy on Tuesday. I will be seeing her on a regular schedule from here out, as well as the NP from radiation treatment.
I asked the BS about follow-up scanning/imaging. She said I'd have an annual mammogram, just as ever. I asked about the issue of higher risk including history of cancer, TNBC, and dense breasts, and if it made sense to do MRI as well. She said it could be but insurance wouldn't pay for it because it's not considered standard protocol. (??? really??? I actually knew that already but honestly don't understand it.) She suggested using ABUS or whole breast ultrasound instead. (I'm not sure insurance will pay for it, either, but presumably it's cheaper.) There is a higher rate of false positives and resultant follow-up testing, like biopsies, which is a risk I need to accept. I'm okay with that. My mammogram didn't see my tumor, which also wasn't palpable. If it weren't for the microcalcifications, it could have been months before diagnosis, and a much larger tumor and worse prognosis. What guarantee is there that I would be so lucky as to have the microcalcs another time? None.
At any rate, I have the mammo and US scheduled for the same day at the end of January, and first visit with the NP the following Monday in February. I feel like if nothing else, I'll have a good baseline report to go by.
If you're interested in knowing more, this is from a research paper I'm reading on the benefits of using handheld ultrasound and automated whole breast ultrasound. As compared to handheld US, "Automated whole breast ultrasound allows for uncoupling of image acquisition from interpretation. The entirety of the breast can be imaged and subsequently the entire data set can be reviewed by the radiologist. This allows for more reliable and reproducible imaging of the entirety of the breast, more extensive images for annual comparison, and allows the radiologist to interpret the entire data set as opposed to representative images obtained by a technologist. Image acquisition for ABUS takes 60 s per view with a total exam time of about 15 min. "
and this: "Medicare reimbursement for bilateral whole breast ultrasound averages around $165" though of course that doesn't say anything about how it would be billed out from your healthcare provider, or how much your non-Medicare insurance would pay.
Here is a link to the research: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5872003/
If you like that kind of thing, you'll also find more links to related research in the right margin.
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Hi Mountainmia- I live in NY and will be approved for MRI and mammogram next March. I also have dense breasts. I was told by RO that doing an MRI is standard protocol after lumpectomy and ins. will pay after getting pre-authorization. They will do MRI on both breasts. Not sure if they will do subsequent MRIs on the non cancerous breast, probably not.
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Thanks for the info, UpstateNYer. That might be based on state law. I would have to check my insurance to see if they will cover.
Speaking of insurance, my premium will go up about 11-12% for next year. I pay out of pocket for a private plan, not from the exchange. It's a decent plan -- has covered everything for me so far this year, after I hit my out-of-pocket max in April -- but it's a pile of money. A lot bigger pile for 2020 than for 2019!
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Mountainmia-yes, could be based on State mandates. Who knows? You should check with ins. Hopefully, they will approve the MRI. Doctors somtimes can push hard for treatment approval. It's the least they can do for us. Geesh. Sorry about the increase in your premium. That stinks. We had a high deductible plan this year. Met the deductible by end of March. So luckily chemo, additional surgeries, blood work, pathology, rads, doctor appts. , and meds were totally covered after that. We're getting a better plan through hubby's work next year at a much higher expense until Medicare kicks in for both of us later next year.
It is so good to hear that you are doing so well after treatment.
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good morning... I woke up at 3am so I could drink some water before my cut off (it's my last lingering SE from chemo, I'm so darn thirsty all the time). I'll probably go back to bed for a little bit, check in isn't till 1030.
Neeli, I'm so sorry to hear about your results and another round of chemo. I can only imagine how devastating that must me. Hang in there and keep plugging away each day.
BAMR, After all I've learned thru this journey, I really think there's a lot of misinformation out there. Mastectomy is pretty much sold as a way to avoid radiation, and onco scoring was not mentioned at my initial diagnosis. I understand the Drs don't want to overwhelm the patient, but a little pamphlet would have been helpful. I had to educate myself with outside resources quite a bit.
HappyAnyway.. It sounds like you and I will continue on the same path for a bit longer. I haven't gotten the for sure "yes" on rads, I'm fully expecting it.
Hope whoever is struggling with LE finds some relief soon.
Mightly congrats on the drains being removed. I bet you feel a little bit better with out those things hanging around.
Jay, happy to hear Nats major hurdles are behind her. Enjoy the holidays and tackle that next surgery in Feb sounds like a grand idea.
MtnMia, glad your surgery went well. Sorry about the premium increase.
I'm probably forgetting some things but I am a little pre-occupied with this mornings surgery. I'll be staying overnight and have to do some arranging for rides (my husband will need to go to work Saturday morning, my 18 and 22 yo daughters are here, but one is dog sitting and the other doesn't drive). The ride I had arranged got the flu so I'm trying to find a new ride home on Saturday (I have plenty of options, just trying to figure out who has the least amount to juggle on a Saturday morning).
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good luck April! You will be fine!
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April sure thinking and praying for you. I’m sure you are doing fine but anxious to hear!
Happy Saturday to everyone.
Mightlybird let us know how that pathology report came out Natalie is increasing her stretches Her chest is sore and tight as to be expected She has a weird numbness in her chest around the incisions which is normal we think as a lot of nerves were cut Time will help that She can’t believe she lost all her lashes at around 4 weeks pfc She would very much like them back!!! I did trim her hair It’s growing pretty quick but more quickly in certain areas Kind of funny
J
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