Starting chemo January 2018
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Thanks ladies! I guess my luck can't all be good though. I'm admitted to the hospital for breathing issues. Taxol induced pneumonitis. Can't breathe if I move around at all. Getting it steroids every 8 hours and am on oxygen. Not sure how long I'll be here. Depends on how I do when off oxygen I guess - right now down in the 80's without it. Feeling ok though. Sad I'm going to miss my big day tomorrow though - I was supposed to have mammograms, ultrasounds, meet with breast surgeon, and do my pre-op testing. Hopefully surgery won't be delayed because of this hiccup. I really want to get it over with and I don't want the cancer just sitting around since I finished chemo..... well, I'll probably be up all night with these steroids now.... hope you are all doing well
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Paisley, I hope you are feeling better
Got my bone scan results today. Saw a lot of arthritis. Also saw a small spot anterior side of L4. They think it is arthritis but can’t say it’s not cancer. Said they will keep an eye on it. What does that mean? No follow up? I just sent my MO a list of similar questions. Trying not to totally freak out
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Hello,
I have not posted in a while. I finished my last week of chemo 5/17/18. I had surgery on 6/14/18. All is well. Preparing for the next step. Stay strong everyone.
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Hello, ladies.
I just spent almost 7 hours in the ER....
Back story:
On Saturday I had to move my daughter's car seat from one car to another. while I was adjusting back strap, I leaned with my chest on a head rest..Felt momentary pain, and since then can't make a deep breath in. Thought maybe my port got dislodged and tore a muscle tissue. So called the onco center. They said go to ER and ask for CT to rule out the clot in the lungs! Oh boy!
So to ER I went. With my daughter(she needed to be assessed as well) and hubby.
Today in Walkerton,ON was the very first day of using brand new CT scan that costs about $2,200,000(!). For each new procedure the staff had to write a protocol. so my particular situation required individual protocol as well. It felt good to be a part of such a big deal:)
Thank goodness, results are good: no clots, port is in place. so must have done something to my muscle..inhailing is still hard though, but they said the discomfort should go away, take Ibuprofen if needed. Herceptin is on Wednesday. Was considering to have my port out, if things have turned out unfavorable, but will keep it for now.
Homemadesalsa- I had to do 1.5 hour drive to do my 20 rounds of radiation. first week and a half felt good, but then fatigue started to settle in. so try to arrange for somebody to drive you, because 30 rounds is a lot!
My RO recommended NO supplements or antioxidants during radiotherapy, as it would reduce effect. Also recommendation was to wait for 2 weeks after the treatment, so the full effect is completed. tomorrow is 2 weeks since my treatment finished, so I am planning to start do something.
Also only water based gel if needed to help skin to stay moisturized. Nothing that would create a film(lanolin) that would make a barrier for radiation.
There is a forum Radiation: before, during and after. Lots of good information there.
Roxy- i have picked up my prescription of Effoxar, but decided i will wait a bit more to start it. Don't want to take any more pills if i don't have to. Hoping that exercising will help. however with this heat wave the hot flashes are pretty bad.....
Have a great day everyone:)
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Olesya- that's rough - I hope you are feeling better. Those pains are the worst. I was in the ER with chest pain to get checked for blood clot at the very end of April - I wonder if it's just the taxol messing with us that bad?... they never did have a solid answer for me of what it was....still get dull aches sometimes on that side.
Well, I got home from the hospital yesterday - 5 days total. I'm so glad to be home. Pneumonitis is the diagnosis - caused by taxol. I'll be on steroids for the next 4 weeks at home and have to follow up with my oncologist and pulmonologist in two weeks. My surgery will be delayed for 4-5 weeks to allow my lungs to heal and to avoid delayed wound healing due to all the steroids. Since I had a Total Response to Chemo - MY CANCER IS ALL GONE RIGHT NOW!!!! - my oncologist said it is safe to wait that long for surgery. I'm going to look forward to finally maybe having a chance to feel better over these next few weeks and maybe actually get to enjoy life a little before surgery!!! The oncologist at the hospital told me that he's been in practice since 1986 and I'm the first case of pneumonitis he's seen. Another oncologist at the hospital said it affects less than 1% of people. Lucky, lucky, me! Not sure if I"ll still need rads since my chemo worked, but I know there's no chance they'll touch me right now for an immediate diep flap, so I'm going to plan on doing just the double mastectomy and staying flat for a little while before doing delayed reconstruction. It'll be hard, but it was the original plan, and I think still the safest route for me to take.
Insideout - Congrats on finishing your chemo and completing surgery! What type of surgery did you have? That was very recent - how are you feeling?
Stay Strong Sisters!
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Oh Paisley what a HUGE relief. How did they come to the conclusion that you had a complete response to chemo? My doctors hedge around their ability to make such pronouncements. But now you can relax, physically and emotionally.
Olyesa- thanks for the radiation briefing, very helpful. I am on the "Starting radiation in June 2018" thread already. Hope your strained shoulder heals up.
Radiation simulation yesterday. I got a bucket-load of advice about everything from deoderent (ok) to shaving (not ok) to lotions (they will provide all, from aloe (first choice) to Aquaphor (second choice) to silvadene (only if necessary). 30 sessions feels like a LOT, but I put the schedule on the Meal Train and all but maybe 4 days are taken already. I have such an amazing community of friends.
Also got a herceptin/ perjeta infusion, but NO pre-meds- hooray! So no steroids or drugs that require steroids (chemo). Huge improvement, although getting this infusion at a different cancer center (next door to RO office) was very disorganized and wasted my time (biggest pet peeve EVER). Getting the port out on July 2.
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Hello, Ladies.
Just came back from my Herceptin infusion. Today was quick and easy.
I asked the doctor in this clinic what might it be, if there's no clots or fractures, but it still hurts to take a deep breath in. He said most likely what happened i hurt my cartilage - soft part of the joint. some inflammation causes the pain.His explanation made total sense, as I don't see any discoloration or bruising on skin, moving port under the skin doesn't hurt at all. Only breathing and certain moves cause pain.
Rather than Ibuprofen (recommended by ER), his recommendation is to put Voltaren Gel over the affected area, because there is not much of flesh, so it should work very well. Will give it a try, because I'd rather put gel over than take another pill.
Paisley2916 - glad to hear you are home.
Homemadesalsa - good luck with your radiation.
Insideout2 -hope you are healing well.
Krose53 - i think the fear will never go away, just try to think positive.
Off to take my nap: Herceptin makes me tired...
Have a great day, ladies.
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I am reading Chemotherapy & Radiation for DUMMIES book, as each process approaches. Now that I am done with surgery, chemo and radiation, I thought I"ll just keep reading. BIG mistake to read a chapter about recurrence. Especially one sentence, quote:"More and more often today, cancer is regarded as a chronic disease that may cause a series of flare-ups thought your life".
I have sailed through the whole treatment with fairly positive attitude, but this sentence have put me in such a dark state of mind:(0 -
Olesya, my Dad (who has been an MD since the 60s) explained it to me this way: Cancer used to be a death sentence for so many many people, and if you were diagnosed, you put your affairs in order. Now it isn't such, and even for the people in whom it recurs, it's STILL not a death sentence, but something that you can LIVE with. Apparently, for us triple positives, Herceptin is the huge difference.
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I hear you, Oleysa! It would be much nicer to imagine we are just done with this. I know that it may recur, and with my genetic mutation, likely will. But it's not here now! And it might not come back! And if it does, that sentence gives me hope that it won't be a death sentence. This part is so hard. Sending love.
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Hello All,
Well, out of 12 days, I've spent 9 in the hospital for taxol induced pneumonitis. The first time around was 5 days (4 on oxygen) and then was home for 2 1/2 days and then went back in with a 103.4 fever. The end result was that they dropped my steroid dose too quickly - from 120 down to 60 when I went home the first time. This caused the inflammation to flare right back up again and cause the fever. What a pain! Surgery is delayed for 4-5 weeks while my lungs heal and I get off these steroids - which they are decreasing as slowly as possible this time. I'll be on them for over a month!
Homemadesalsa - Here's the story of the complete response to chemo. On April 30th I had severe chest and back pain and had to go to the ER to get checked for a blood clot. All was clear. So, my oncologist sent me for a bone scan which showed 3 suspicious areas for metastasis - 2 ribs and my skull. I had to wait 3 weeks to finish chemo to get my PET scan to check for metastasis. When I finally had my PET scan, absolutely no cancer showed up anywhere in my body - not even in my breasts. So, I am extremely relieved and lucky - not only did it not spread, it is completely gone. I was stage 3 with cancer in both breasts - never did I ever imagine it would be completely gone - I just assumed it would shrink. I feel SOOOOOO lucky. I still have to have a double mastectomy - which should have been this week - but the pneumonitis is delaying that. But, now I'm hopeful that I won't need radiation since the chemo worked so well. I'll find out for sure after surgery.
I don't know why, but since my last hospital stay (I just got home on Sunday) - where I felt like a human pin cushion - I've been really down. Maybe it's the steroids? Maybe I've just had enough with this? My muscles are so weak, I'm so tired, I can't physically do anything, I can't breathe well enough yet to do much around the house, let alone go anywhere. I'm feeling like a lousy mom because my kids are home for the summer and I can't do anything with them. I feel like I haven't had any fun for months because I'm too sick or tired. I've done really well emotionally for the last 6 months (I've had my bad days, but always bounce back), but after this last hospital stay, I think I've reached my limit. Not sure what's going on with me....in a funk and having trouble getting out.
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Aww Paisley, so sorry you are going through this ordeal!! I too had taxol-induced pneumonitis and it scared the shit out of me. But with time it resolved itself and I am now feeling 200%! You will too.
I'm in Alaska allowing time to heal all wounds and memories of last winter. I have a huge garden and it is occupying all my time and keeping me in shape. Surprised a brown bear and cub down by the greenhouse this morning.
Good news is that I have enough hair that I woke up with bed-head this morning! Bad news is that I now get bed-head! I'm grateful....
Chin up warrior ladies!!!
Laura
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paisley, so happy you are going to finally start healing. It’s been a long haul. Your body is exhausted and I think that effects you mentally. As you get stronger, I think your mood will improve
Awesome scan results. I recently had a bone CT. They saw a lot of arthritis and an area on my L4 that looks like a bone spur but could be metastasis. I’m 3 month out since my last chemo. My oncologist thought a biopsy was overreacting but I can’t stop worrying. I meet w her on the 5th to discuss results and how to move forward. But I’m terrifie
Hope everyone is recovering well or doing well with treatment. I so appreciate everyone’s input.
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Paisley2916 - hope you feel better soon.
I hear you on a mental breakdowns! These past 2 weeks my emotions are on a surface, anything can trigger tears.
The latest trigger was that I had been booked for a CPR First Aid course for 2 days. I am trying/hoping to get back to work in September, so need to renew all of my certificates if I want to work in child care setting. So the day before my course starts, I get a phone call that I need to go tomorrow to get the stress test done ASAP - to check my heart. Firstly, I need to be on a road for 1,5 hour to get the clinic that does that test. Secondly, I had to coordinate cancellation and transfer of course dates with the place that runs the course, with my employment adviser, and my mother-in-law who is also my driver to all of my far away appointment. I am totally stressed out that I need to make all these arrangements! In addition, I called to the Cardiac clinic several times to verify if there any other available dates, or could it be done closer to my home. they said talk to cancer center. so calling them with the same questions. they don't know if there anybody doing stress tests in my area. calling to my family doctor's clinic. Apparently he is the one who does the stress test for the whole area, but he is booked till July 24th..
I was also worrying that the test was ordered after my ECHO-cardiogram results. Inquired about that - no, results are good (64% output). the order was made on my 2 weeks old complained that i had strange heart ping that lasted for about a minute in the course of 2 days. haven't felt that since.
Anyways, went for test, walked on a inclined tread mill for 12 min, all hooked up to wires. The nurse was not supposed to give me any results, but she said because everything looks good, the cardiologist doesn't even need to see me:))
My hubby laughed: you are stressing out about stress test, lol
Also went to my chiropractor/energy master to adjust my chest. he said that my rib was a bit pushed out of place(slightly dislocated?). Anyways, it still hurts, and the pain radiates to the back and elbow, but at least I can breath.
These last 3 visits to doctors(CT scan, stress test and chiropractor) threw me off emotional balance. I am trying to get back to my life, to live normal life, and then these urgent appointments, when I need to cancel everything, remind me that I am not ready to be back yet!.How am I to go to work when sometimes i'll have to take care of my health?My health is priority, yes! I just don't like my plans to be cancelled like that....
Homemadesalsa - you are right, we are very fortunate to live in this time and age, when new medicine and treatments can help us in a very long run:)))
Okkate75 - we have to hope for the best and deal with the problems as they arise, right?:))
Krose53 - keeping my fingers crossed for you(no pun intended;)))
lmurphy - it's exciting about the hair:))
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Hello everyone! I haven't posted in a while but iI a been keeping up with the posts. I can really relate to Paisley's post regarding going back to work. I'm back at work but still in treatment (HER2+). This means I am occasionally taking conference calls with a needle in my port sitting in the infusion center being pumped full of herceptin.
As bizarre as that is, I recently had an echo, the results of which have me going back to see a cardilogist (yes, the potential cardiac issues associated with AC and herceptin are real). This is all going on when there is a new team forming at my job that I want to be a part of that involves a lot of travel. How can I travel for work when I am completely tied to tests, treatments, and doctors appointments?
I realize my life will never be as it was pre-cancer but the limitations are something I struggle to get used to.
I just needed a moment to lament my situation with people who understand. Keep fighting the good fight!
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lmurphy, how long did it take you to recover from your pneumonitis? What did they do to treat it? I'm on super high dose of steroids and the side effects are awful. I'm trying to get better so I can get my surgery. Did you fully recover? Any scarring or permanent side effects or issues from it? Did you finish all of your chemo or did they diagnose your pneumonitis and then stop or change treatment? Thanks for any info
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Paisley, my pneumonitis started after 3rd taxotere and got much worse after 4th and final dose. I would not have been able to handle a 5th dose. I was struggling to breath, coughing, and hard to talk. My sadistic MO said to wait it out. Went to internist and he said steroids OR wait it out, that it would eventually resolve on its own. I chose NO treatment. It got better but took about a month before I felt better and 2 months before I felt 100%.
In hindsight, I would have postponed my 4th dose until I felt better.
I don't feel like there has been scarring or other repercussions. However, it sounds like yours may be more severe. Hopefully you're done with taxol? Because it will take you the next 3 weeks to heal before surgery!
I'll be thinking about you!
Laura
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Hello Everyone,
I haven't posted anything in a while, but logged in to read posts.
I had a masectomy and an expander placed on my left side. I also had lymph nodes removed. My first drain removal took 3 weeks my second 4. It was removed this past Wednesday. I will meet my radiologist this week, but will not begin radiation for a few weeks. I plant to get DIEP reconstruction after completing radiation.
My two teenagers feel things are better since the surgery. At this time I feel chemotherapy was worse, however I am struggling to adjust to the numb feeling on my left side.
It's funny hair loss from didn't bother me, nor does the mark from surgery. The what and what not to do list to recover from surgery does. You are told to limit arm motion to heal , but have arm motion to reduce the need for PT. I start each morning with stretching to limit discomfort. I read stretching is easier after a hot shower. I will try this shortly. I am open to any tips.
I am optimistic everything will get better with time.
Take care everyone.
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Hello All!
Been having a rough time since finishing chemo. Just got out of the hospital for a 3rd time in 6 weeks. The first two times were for pneumonitis and I just ended up in the hospital again last Wednesday-Friday for Rapid Atrial Fibrillation. My resting heart rate was 210 and my heart rhythm was completely erratic. I am SO tired of these complications. My double mastectomy was originally supposed to be the last week of June and now, I am rescheduling with the breast surgeon for a third time to meet with him to get my surgery date - after I now get cleared for surgery with all of these complications. Plus, I'm still on high dose steroids for the pneumonitis, so this may delay surgery even more. I'm thinking it'll be in August some time now. I'll find out on July 23rd - hopefully- what the surgery date will be. This has been such a roller coaster ride - emotionally and physically. The side effects of chemo, super high dose steroids, and now the heart thing are really taking a toll on my body. I'm so tired of feeling like crap - I was supposed to start feeling better after chemo ended - and all I've gotten was worse. It's very frustrating. I feel like I haven't had any fun in 7 months - and I'm too tired or not feeling well enough to actually do anything fun. I feel like the only time I get out is to go to doctor appointments. It's getting a bit depressing. Sorry to vent - it's just been a really bad 6 weeks or so....thanks for listening.
Paisley
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Inside, you've finished all the hard stuff, so let the healing begin! 8mos post-surgery, my left side is still numb, but I've gotten used to it. I work outside in the yard every day and if I overdo it with my left arm, I get the lymphedema. I take it easy and it goes away. You've got this!
Paisley, I'm so sorry you're still having a bad time. But, chemo is DONE! The side effects take a while to go away. 6mos from now this will all be a blip on the radar. Hopefully your surgeon has good news on next visit.
It's berry-picking time here in Alaska; wild strawberries and blueberries. They are little, but incredibly flavorful! The bears like them too....
Take care ladies!
Laura
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Oh, Paisley, I'm so sorry you are going through this. Bah. I'm sending healthy vibes your way!
Things are good over here, for the most part. My energy levels are largely back to normal, I'm back to my usual exercise and daily activities, and I taught summer school without the drag of chemo or radiation, and I could still do it. Phew!
My twin sister has had a lot of setbacks--her tiny tumor turned into bilateral breast cancer, spread to five nodes on one side and two on the other. She had her double mastectomy and axillary node dissections last week and starts AC-T next week. It's really hard to see her go through all this, and I wish I could make it better. But there's nothing to do but show up and tolerate it. It is what it is. Cancer sucks.
Hope the rest of you are hanging in there!
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Paisley, hang in there.
Lmurphy, thanks for the support. I will work on balancing what I do.
Okkate75, It is hard to watch loved ones go through treatment. Your ability to reference your experience in offering support will be appreciated. Everyone's path is different, but just being able to reach out here has been helpful. Sending positive thoughts your way.
I will need to adjust my work schedule. My whole body aches. When I was at home I walk around, however getting up from my chair to walk to a meeting I feel aches. These are similar to what I would feel a few days following chemo. I am sure the environment makes a difference.
Wishing the best for everyone. Happy to be present. Take care.
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Hello, my fellow warriors. I know we kind of moving on with our lives after chemo and other treatments. But I really need to share...
On July 25th(on Wednesday) I had my first post treatment mammogram. On Thursday they called and asked me to comeback on Friday, as thy needed to do more imaging on my non-surgical side. Gotten nervous a bit. Went in on Friday. They did a new image, then they said they needed to enlarged image on a certain spot. Ok. I see on a screen some highlighted area. Still ok. And then technician says:" We also need to do the ultrasound on this breast.'-Wait, what???
As I am sitting there waiting for the ultrasound tech to pick me up, my tears started to pour down my face. I am terrified. I am planning mastectomy.It's like a bad dream, and things start to repeat themselves....
As the ultrasound progresses, I told my technician:"I know you are not supposed to tell me anything, but could you please let me know if I need to prepare mentally for biopsy. She told me she doesn't see anything worrisome, and the only reason the needed more imaging, because my breasts have changed so much since last mammo(I was still nursing at a time (wow, feels like eternity ago!))).
Anyways, on Monday July 29th I had breast MRI.
Only today received results. All good. However.....
Last night I found another lump in my left breast....Do not panic! Breathe! Have an appointment with family doctor- after physical exam want to request ultrasound on that spot. And if needed the biopsy. And if needed - double mastectomy it is....But lets not get ahead of our selves.....
On a bright side: I spent the most wonderful three days at the Trillium Resort &Spa at the Stretch Heal Grow Retreat for young women with breast cancer through Rethink Breast Cancer Foundation.
There were 24 of us - young girls under 45 y.o. The retreat consisted of yoga and meditation twice a day, workshop on sensuality, buffet meals three times a day, trail walk, access to the lake, pool and spa. we were accommodated by twos in a room. We were given a goody bag, a good quality jewelry. We made Mala beads, where each bead represents some sort of mantra(there 108 bead + one Guru bead). there were lots of symbolic rituals that helped us connect with ourselves and each other.
We shared our stories(which was therapeutically in itself). We laughed and cried. We made friends.This retreat really helped me to clear my head, as I felt I was spinning downwards into depression.
Just need to stay calm, and focused on positive.
Hugs to all of you.
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Oleysa- Sending positive thoughts your way. We're here for each other.
Take care.
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So good to hear from you, Oleysa! Glad your mammo of BOTH breasts went well! Chances are any perceived changes in rt breast are due to surgery and radiation OR your mammo would have picked it up last week. Remember what you learned at your spa retreat and take a deep breath, stay calm and focus on the positive!
BTW, that spa retreat sounded pretty wonderful!
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Went to the doctor today. He thinks that whatever I have is most likely a cyst.But for my piece of mind he requested an ultrasound. Now we wait.
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Thank you, Insideout2 and lmurph.
I keep checking in here to see how is everybody doing. But I guess many have moved on with their lives and try not to focus too much on cancer. Maybe it's for the best.
Love to all.
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A cyst is GOOD news, Olesya! Let us know how the US goes.
I agree and think we all have moved on in our own ways, leaving the BC chapter in the dust but ever-mindful. I'm thinking Oct-Feb might be check-in months here as we reflect on our anniversary of diagnosis and treatments. I'm looking forward to hearing lots of positive news.
I'm still in Alaska living the simple life. I've been harvesting (and canning) cucumbers, tomatoes, green beans, peas, beets and everything salad. My DH is fishing for salmon and we are both berry picking and mushrooming when it's not raining. This morning I was a guest on the local public radio show where I talked about the importance of bees in our gardens.
Here's hoping everyone's summer is what you each want it to be.... Keep cool!
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hi everyone- nice to see this thread pick up a bit. I rang the bell at radiation today. 33 treatments later, whew. But I've still been riding my bike- got 4th in my age group at the Pierre's Hole mountain bike race last weekend, which was nice. Start AI in 5 weeks, and on an every 3 week schedule for herceptin and perjeta. Oleysa I am pulling for you- I bet it's just a cyst.
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Homemadesalsa-It good to hear you were able to ride your bike. I start radiation soon, 33 treatments also. Any tips to deal with SE?
Lmurphy- I like gardening. I am new to it. Less than 3 years. This year I grew various peppers and herbs in pots. It seemed easier. I have enjoyed reading your updates.
Oleysa- keep us posted.
It is good to get updates from one another.
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