Starting Chemo in November 2017
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Tina I hope you can do the radiation. My RO said it cuts the risk of local recurrence from 30% to 10%. You are just as important as your patients. But yes, giving it your best effort is all anyone can do. Fingers crossed for you.
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Tina...How nice to have 6 weeks off from onco visit. I hope things work out with the radiation visits.
Hope
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best wishes on your radiation, i found it the simplist part of this pesky thing
Well ran into a pal at the gym, she is dealing with a reoccurance of a cancer that is in her jaw, we chatted, she is doing well, i told her of my reoccurance crud. She suggested aquaphor for the pealing i am dealing with on my hands and feet. Holly moly, i have been using so many creams but last night i slathered my feet with aquaphor, put my socks on and this morning the pealing and redness is so much better! Woopie!
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Iris - Aqauphor is indeed a miracle product! I have the huge jar of it and use it as lip balm, moisturizer, on my scars, etc.
Tina - I too hope you are able to do radiation. In this case you are the patient and you deserve the treatment recommended for you.
Going in for a vascular ultrasound this afternoon to try to find out if it is a blood clot that's causing my neck vein and port incision to bulge, which is in turn causing neck and trapezius pain similar to a pinched nerve. It sounds ridiculous, but I'm kind of hoping it's a clot! As my MO said, a clot is relatively easy to treat with medication.
If it turns out that that's not the case, I may need to have the port removed or "adjusted", which would require surgery. Not something I really want to deal with, and my veins are terrible so I sort of need the port for the next 8 months of Herceptin/Perjeta infusions....
Also have my DEXA scan for next week. I am waiting to start Arimidex until after my 6 month check with my breast/plastic surgeon so that I've had a few weeks for the chemo drugs to leave my system and no new meds added in. I am still experiencing some swelling, which I attribute to the alloderm.
Can't tell if hair is beginning to grow yet or not. I have a few short hairs sticking straight up on the top of my head but it's impossible to tell whether it's new growth or broken off bits. The thin spot on top of my head looks the same to me. Legs, underarms, etc. are still smooth.
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Saw my RO with the pet scan results this morning and it was unclear for cancer of the spine, so now I’m having an MRI next week. This makes no sense to me as I thought the pet scan was to rule out cancer. She told me last week that it would, so now they are unsure. (?) I have a compression fracture in the middle of my back and below it had another area lit up that they are questioning. So, maybe my forward fall busting my lip did the damage, but I don’t like the uncertainty my doctor had. I fell two days after my first chemo treatment, didn’t feel the pain until 6 days after the fall. The scary thing I learned today is that whether or not your lymph nodes are invaded, the breast cancer can spread to the bones. Rare, but possible. I didn’t like the look my doctor had, and nothing she said made it sound like - don’t worry. I feel like that day I went home after my second mammogram and the radiologist said - “I expect this to be a malignancy.” Well at least my RO didn’t say that. When will this end
This is a nightmare. I have the MRI next Wednesday. I hope it is just damage to the spine. These are common for people my age. The sudden jolt could have damaged my spine. I learned they didn’t X-ray my back high enough to see the fracture two months ago. It isn’t getting worse, but it won’t go away either.
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good luck blair, i went thru a monstrous time of mris to figure out back problems. I have a crappy back but other than admitting to an active life style, can not id a fall that caused my problems, bbest wishes
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Blair, sometimes areas of arthritis show up as suspicious on scans. I know that was the case for me. I'm sorry you have to wait for an MRI. The odds are in your favor that it's damage to your spine and not metastasis. Many people on this thread will be thinking positive thoughts for you.
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Proudtospin - Do you have metistatic breast cancer of the back? What part of your bones were infected?
I just never heard of anyone having a breast cancer and spinal cancer at the same time. Especially in early stage - this is ridiculous, but I know I’m getting ahead of myself. Another week of stress
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Dark13, you're reminding me that I need to get back into a light exercise routine. I really haven't done much of anything, and I know I should. I think the B supplements do help a bit with neuropathy. I haven't had many issues and have been taking them.
proudtospin: love the bedsheet idea! I also love Aquaphor and plan to slather myself in it once radiation starts.
Mom4gma3: I hope my hair surprises me like that. So funny! Also, what a good idea about the leg hair! I always wished my mother had guided me when I was younger to wax rather than shave. Maybe I'll try that with the new hair growth and see if it doesn't help keep the hair fine!
Magari: Any update on your scan?
Blair: I'm so sorry your scan didn't show anything conclusively reassuring. How annoying! Wishing you all the best.
I thought I was beginning to see hair growth, but I think it's only stuff that never fell. Hard to tell.
I am just over two weeks PFC. I met with my MO yesterday and I'll be starting tamoxifen in about 6 weeks, about the same time I start radiation. Before then I have surgery (prophylactic mastectomy and reconstruction). I'm very nervous. I need to start preparing for the surgery, now that I know what to expect. I'm planning to get the special bras with drain holders this time. Who knew they existed?! Apparently insurance often covers those. Does anyone have experience with this?
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Star2017 - I just safety-pinned my drains to the upper part of the sports bras I was wearing post-surgery. (The drains had tabs that the hospital had used to pin them to the shoulder area of my gown.) I also used an ID lanyard to hold them while I showered and/or when the bra became uncomfortable. https://www.target.com/p/yoobi-153-lanyard-assortment-multicolor/-/A-52087821
The most useful pre-surgery purchase I made was a wedge pillow, to help me to sleep on my back instead of rolling onto my side.
My ultrasound was negative; i.e., the tech did not find any clots. My MO should have the results tomorrow and will let me know next steps. But I fear it will involve surgery one way or another to remove, adjust, or replace my port.
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Hello all.
Blair, I hope MRI your results show only arthritis and a spinal fracture. If you have a spinal fracture, no wonder you are in pain.
My dark hair showed up all of a sudden a few weeks ago, so don’t give up hope ladies. I pulled a hair yesterday from over my ears, and it measured 3/4 inch. The top isn’t quite a 1/2 inch. It’s still soft like baby bird feathers on top, I held off leg and underarm shaving as long as I could. It sure is hard to do it regularly again. It’s been such a cold Spring, it hasn’t mattered.
I’ve had pain around my shoulder blade and sometimes it tingles down my arm for about 3 weeks. It’s only triggered by a reaching movement that I can’t even reproduce on demand. Saw the Chiropractor yesterday, and he said neuritis (inflamed nerve) maybe caused by impingement near the spine in the neck. I told him about my tendonitis in the foot followed by inner elbow and that chemo and Anastrozole can both have inflammation side effects. He did chiropractic ultrasound on my neck and adjusted me, and I felt much better yesterday, but I still triggered the pain a couple of times today.
I’m still having intermittent swelling in my left breast that I think is lymphedema. Anastrozole can also cause breast swelling. I have an appointment with my plastic surgeon in two weeks and my oncologist in three. I’m experimenting with preventative measures from Dr. Google. I really don’t want to move up either of those appointments if I can avoid it. I’m also having a baseline bone density scan in a couple of weeks and an annual eye checkup. Who has time to work?
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Iris...It's great to find a product that finally works! Sorry about your pal at the gym. Glad she is doing well.
Magari...Keep us posted on the results of your ultrasound. It should be quick and easy. Oops, I see you got the results and all is fine. Woo Hoo!! Speaking from experience, It's no big deal if you have to have the port removed and a new one to replace it.
Blair...I'm sorry the PET scan didn't provide any answers....hopefully, the MRI will. A nuclear bone scan revealed my metastatic disease.
Star...I didn't buy any special bras. When I had my lumpectomy it was in July. I wore camisoles with the bra lining and put my drain in there...it worked just fine.
Orangedaisy....Who has the energy to work??? LOL Not me, for sure
Hope
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blair, my mets are all throughout my abdomin, i know i have a tumor at the top of my spine that no one would consider operating on so not sure if it is mets to spine
My pt person is very cautious about the exercises she shows me and has said to do her movements and not those of any trainer at tne gym. She is way more trained than the trainers at the gym plus she has my full medical file.
Hope, it was nice to see my friend Annie at the gym, she is one tough cookie as they say, a mojor portion of her face has been removed, I am not sure how i would feel if it was my face and cancer.
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Nonahope Meant to mention how happy I was to hear about your grant. That's good news. I hope the tweaked regime helps you feel better.
Magari I'm sorry to hear about your port complications. I hope it gets resolved soon.
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Thanks girls for your nice comments. I’m a worrier all right and rather impatient for answers. The waiting for results just drives me insane, and I’m just so tired of this whole breast cancer mess. I just want to run away so badly from doctors, tests, clinics - anything medical! I’m sure you can relate to this.
Anyway, I talked again to my RO nurse, who is so nice. She said that pet scans most of the time can detect cancer tissue, but in my case the images were unclear except where they found the compression fracture that is causing my pain. That alone can take months to heal. The area below it needed to be looked at closer to absolutely rule cancer out. She even said that my fall probably caused all of this, but there’s always the possibility of it being cancer. She also said that they want to dissect those areas with the MRI images so they know how to treat it. So, now maybe I won’t worry too much. If I had had the back pain prior to my fall, then this would be a huge concern. We also discussed that when I fell, I was “out of it” and could have slammed myself onto my back, not feeling immediate pain. I do remember my mouth and face hurting the most as I literally bit through my lower lip. By the day after, the chemo drugs were kicking in, with the following days of taking pain pills. She also mentioned that I had steroid drugs in my system that could have masked the back pain until 6 days later. My son in law, (who’s a flight nurse), also said that the fall could have partly fractured my disc and days later fractured more from everyday movement that caused the stabbing pain to start after 6 days (which I haven’t had since).
So - I will learn next week. Talking to everyone made me relax more about it. Got my blood test out of the way. That’s just preparation for the MRI. With all this radiation going through my body,I’m beginning to look like this! I definitely felt like this green thing looks when I had chemo!
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PS - I meant to mention that I really thought I had muscle inflammation from the chemo. I was wrong and now realize that bone pain can feel like muscle pain. I guess it’s the nerves in these areas that are so sensitive making it confusing to know the difference as to where the pain is coming from. However, I remember the chiropractor I saw last Dec. said that when there is spine damage, the muscles in your back can flare up trying to protect the back - something like that. So that made me think I had inflammation of the back. My primary doctor did not X-ray my middle back area in January,so that was a waste of money and not too happy with him since I complained my whole back hurt. Does anyone ever listen? It’s taken me this long to get a doctors attention to my back pain!
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blair, well glad you seem to feel better. I was going thru a period of back pain, the only thing that helped was a cortesone shot. That was a period before the cancer diagnosis, wonder at times if that was part of the cause. But hanging with friends always makes me feel better
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I was considering the special bras with pockets for the drains because last time I felt I just didn't have many options in clothing that would hide the drains from my young children. But I was also pregnant at the time, so hopefully it won't be as difficult this time around.
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I’m trying to remember how I pinned my drains. I think to the underside of my bra so that I could keep them out of the way if my pants. Hopefully Star you won’t have to have them for long. I had mine 5 days. Loose tops or tunic type tops would hide them.
Orangedaisy - my hair is beginning to take off and grow faster. It’s not as all white as I thought it would be. The bottom back has darker hairs coming in and some at the top. I think I’ll have pure white at the sides and a mix elsewhere. I still look bald with such thin hair as it’s now 1/4 inch long. However it must be finally trying to grow at a normal rate which for me was 1/2 inch per month. I think once I get the top length to an inch. I’ll shave the sides short for a while until the top gets longer and then grow everything out. Gosh - it will be a year at this rate to even have a decent pixie. Having grey hair will be so different. I don’t have a razor- maybe I’ll just go to my hairdresser and see what she can do with iteventually.
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Star, I used a utility apron for drains. They have them on Amazon and places like Lowe’s and Home Depot. The hospital gave me some of the bags that hang around your neck. I only used those when I was changing clothes or bathing.
You can buy tops, jackets and camis with drain pockets. I had some, but never used the drain pockets. It was easier to tie on that apron.
Blair, I’m glad your hair is growing. I find myself looking at people with short hair and wondering how many inches long it is, and how long before mine will be that long? My 1/2 inch on top stands straight up. When will it have enough weight to lay down?
I moved my appointment with my oncologist to this Tuesdaybecause of the swelling under my arm and over my breast. It’s really uncomfortable and not getting better. I can’t figure out what has suddenly triggered it. I blame the Arimidex.
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orange daisy, could it be lymphedema
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Orangedaisy...Will be with you "in spirit" on Tuesday. Hope all goes well and you get some easy answers.
Hope
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Good morning, all. Sorry to hear that a number of us are dealing with issues/complications.
I spoke to my MO's office late Friday afternoon and was told that she had been unable to reach my port surgeon. She suggested I contact her directly, so I left a message with the surgeon's service asking her to call me on Monday.
Busy couple of weeks ahead: I have PT and my bone scan on Tuesday, and microblading on Thursday, if I don't have to reschedule it. Next Tue I have my 6 month check in with my breast/plastic surgeon and a consult with an oral surgeon about a small patch that's turned up on my lower inner gum line (which my dentist doesn't *think* is anything to be concerned about, but he said better to make sure.)
I am supposed to return to work next Wed. But that may need to be pushed back a little if I end up needing to have another port surgery. We shall see....
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My oncologist referred me to a Lymphedema Clinic. She said it felt like it could be a Capsular Contracture around the implant but there was definitely swelling she wants the clinic to look at. I have a 3 month follow up with my PS next week. He can assess the scar tissue around the implant. Otherwise she said I looked great and she rubbed my hair on top. It is soft! I understand why she couldn’t resist.
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Magari....You have a full plate the next couple of weeks! Sending thoughts and prayers to keep you strong.
Orangedaisy...Good luck at the clinic. I hope you get relief. I've never dealt with lymphedema, but it sounds horrible.
Hope
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hey has anyone experienced swelling in their feet? I wear socks to bed over all the cream slothered on my feet. Wore a pair of socks laxt night, had them for long time but they were tight! I had to change socks during themnight as they,hurt my poor toes! Could my tootsies be swollen?
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Iris...I've noticed that my feet are a bit swollen -- especially, in the evening. I think mine is from the neuropathy, though. It's mostly my right foot which is the worst. I try to wear socks that don't cut into my skin, as they do leave an indentation.
Hope
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thanks, gonna ask my doc but also gonna not use certain socks at night . I wear socks at night over the goopie cream on my feet. The cream is helping control the red and peeling skin
Oh poo.....
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Tonight is my MRI (6:45 pm of all the crazy times), and I have again talked to my RO this morning. She told me that in most cases if the pet scan saw anything that suspected cancer, they (oncology dept.) will get a call within 24 hours from the radiology dept. and require a biopsy. That didn't happen, so I'm more relaxed about this back issue. She said the same for MRIs, but MRIs aren't used to detect cancer. So this sounds like they are wanting to get better images of my fracture and possible other damage to see how to treat it.
My results won't be known until the 19th, but if it were a threat of cancer, again, they will call earlier. I see my regular oncologist on the19th, so this is why I learn on the 19th. My oncologist will order a bone scan (used for future comparisons) and start my hormone therapy then. I have this feeling if my bones are already plaqued with osteoporosis, these hormone pills might make it worse.
Well - as far as radiation I have 3 more treatments to go! Yeyyyyy! My breast is redder at the top with a rash due to having been exposed to sun. My doctor said that will clear up in time. The rash is called something complicated, but I forget what the nurse called it. I'm horrible with remembering medical terminology. So I think I'll live through it. Radiation is nothing compared to the pain and hassles of chemo! It itches from time to time, but I try my best not to scratch it.
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Blair....Good luck. I hope your MRI produces good results. Yes....the hormone pills will not be in your favor where osteoporosis is concerned.
Hope
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