We know, doesn't help that one of the chemo drugs will actually ruin arm veins, plus she has mostly collapsed veins in her arms. Just the procedure for installing the port is requiring her to be completely under, not just a local as was first told to us.
Sparhawk's wife's journey
- Thread starter Sparhawk
- Start date
Okay, jump forward through an unexplained (yet really cool) means to today. Last treatment for my wife with all 3 of the current drugs, two treatments left in this cycle. Next week, 2 drugs, last one with the experimental drug. The following week, May 17, will be a single drug, and the last treatment of this cycle. Everything is going well with the infusions, no issues this week with the port, but they are setting up an appointment with a dermatologist in The Woodlands to try to get her some help with her very dry and currently rashy skin.
May 23 will be the first of her second cycle of chemo treatments, 2 drugs, administered 4 times total, 3 weeks between each treatment, which means we will be finished with chemo before the end of July. May 23, June 13, July 4 and July 25 are the dates.
We heard someone ring the bell today, for being finished with cancer treatment and free of all cancer. We didn't see them, but just hearing the cheers and the bell was very emotional, even now it's still very moving and it was several hours ago that we heard it.
May 23 will be the first of her second cycle of chemo treatments, 2 drugs, administered 4 times total, 3 weeks between each treatment, which means we will be finished with chemo before the end of July. May 23, June 13, July 4 and July 25 are the dates.
We heard someone ring the bell today, for being finished with cancer treatment and free of all cancer. We didn't see them, but just hearing the cheers and the bell was very emotional, even now it's still very moving and it was several hours ago that we heard it.
So, that dermatologist isn't going to work, the only slot they have open is during the time of her final chemo for this cycle. So that's a but, next open slot they have is in July, a week before her FINAL chemo. Dr's team is now looking for other options, the rash is driving her crazy at times.
If it's super itchy maybe she can talk with her doctor/team about taking something like Benadryl. It's not going to heal it, but she could get some relief from the discomfort.
She's already on some stuff much stronger, this is to try to find some relief from side effects of drugs to fight side effects. Basically, from the way it looks now, she'll be on the way to healing from all of this before they find an appointment to get her in. It's annoying to her, but currently manageable, the drug causing the problem has only two treatments left.
Now the next cycle is going to be interesting to find out what reactions she has during it.
Treatment #12 done. This was the last treatment with the experimental drug, next Thursday is the last treatment, a single drug, of this cycle. She's positive, but a little apprehensive at the same time, happy that this cycle is ending, worried about the possible reactions that can come with the new treatment cycle. She really doesn't like change, especially when the change involves unknowns. She has known what to expect for the past few weeks, but we won't know until that week after the first of the new cycle how the new drugs will really affect her. I'm trying to stay positive for her, fight against her inclination to expect the worst of it, but I can only do so much along those lines, and only so much to alleviate her darker expectations and worst case scenarios that she plays in her own head.
Are there any non-human proteins in any of the treatments that she's on? I'm sure that this may sound like an odd question, but if she's having itching and a rash that isn't being relieved by very strong histamine blockers, it's something to be aware of. Hopefully, it clears up soon 
The itching is from dry skin, the rash a side effect of the chemo drug she finishes next week. She's really upped her water intake, and it does seem to be helping some. We know most of this will clear up starting in about a week to two weeks.
The worst side effect of the experimental, a biologic, was a huge amount of acne like sores. But, it is a side effect that actually shows how well it is working, the worse the breakout, the more effective. She had the breakout from the waist up. The research nurse almost did a dance after the 6th treatment because it was so bad.
The worst of the dry skin is from the drug that ended last week, so we feel good that it is partly getting better because we are getting further away from that last treatment.
The research team is still looking for options to get her into a dermatologist as soon as they can.
The worst side effect of the experimental, a biologic, was a huge amount of acne like sores. But, it is a side effect that actually shows how well it is working, the worse the breakout, the more effective. She had the breakout from the waist up. The research nurse almost did a dance after the 6th treatment because it was so bad.
The worst of the dry skin is from the drug that ended last week, so we feel good that it is partly getting better because we are getting further away from that last treatment.
The research team is still looking for options to get her into a dermatologist as soon as they can.
That is huge though. I know it comes with so many other issues, but that finish line is such a big deal and not everyone sticks it out through there. She should be proud of herself.
It's more of a checkpoint, since there are 4 more chemo treatments over the next 9 weeks. The end of July is the Finish Line and should be a bell ringing day.
First treatment series is DONE! We have finished 13 weeks of weekly chemo.
Next Tuesday we have a 7:30am appointment for a full breast exam (ultrasound, biopsy, and mammogram) then a later appointment for a follow-up with her breast surgeon. Wednesday is an afternoon appointment with her Oncologist, and hopefully the first of the final 4 chemo infusions, there will be a 3 week break between each treatment, and they will be on Wednesday instead of Thursday.
Next Tuesday we have a 7:30am appointment for a full breast exam (ultrasound, biopsy, and mammogram) then a later appointment for a follow-up with her breast surgeon. Wednesday is an afternoon appointment with her Oncologist, and hopefully the first of the final 4 chemo infusions, there will be a 3 week break between each treatment, and they will be on Wednesday instead of Thursday.
Ultrasound this morning showed no discernible tumor in the left breast (was originally the size of a small lime), only one lymph node of any size remaining. Tomorrow, May 23rd, will start the final cycle of her chemo treatment, 4 total treatments, over 12 weeks, final infusion will be around July 25, that will hopefully be confirmed tomorrow afternoon. Surgery will be sometime around August 22nd or after.
This was tremendous news and confirmation for the success of the treatments.
My wife is nervous about the new treatments, basically because we'll have to learn how these affect her.
Week 1, Cycle 2 is done. This was the first of four treatments to finish off her chemo. The treatment package is referred to as AC. It includes a side effect that is called a couple of things... Red Dragon, Red Scare and I'm sure several other iterations of "Red ...". Literally, of of the treatment drugs is Kool-Aid red in color, and as a side effect... you're gonna pee red for a couple of days. We get three weeks between each treatment this time, many people experience severe nausea with this regimen, so we'll see what happens over the next couple of days.
We only have three more chemo treatments after last night, the end of this tunnel is getting closer.
We only have three more chemo treatments after last night, the end of this tunnel is getting closer.
Red Devil - Doxorubicin/Adriamycin. That's a tough one - my best to your wife, and help her stay off her feet as much as possible (blisters are a common side effect). Don't be afraid to get a medical marijuana card (if you can - is that a thing in Texas?). Many of the patients I speak to - and I work in radiology and radiotherapy, so I've spoken to quite a few - say it's the best decision they've made to maintain quality of life during treatment.
Also, relevant xkcd:
GasBandit
Staff member
It is not. It is very, very not. Unfortunately.
I've been cooking or taking care of getting dinner for most of the past 3 months. People have brought her some soups or other items occasionally, but mostly me. Past month or so has mostly been some type of carryout, she just can't stand the smell of cooking, once the food is done she's fine, but cooking it.... I had to completely air out the house a couple of nights. I really feel that we're doing good at this time.
Been almost two weeks since the first AC treatment. It's been pretty rough overall, but improving right now and getting the proper medicine to treat her side effects. She had a huge eruption of mouth ulcers that also have spread down the throat, made it very, very difficult to eat. Picked up a medicine for her on Monday that has got that going in the right direction on healing now. The nausea lasted about a week, and I know she's lost some weight over the last two weeks because of not being able to eat. But it's all getting worked out now, and hopefully we will be ahead of everything for the treatment next week.
July 4th looks to be an interesting day, she actually has a chemo treatment scheduled, and a follow-up doctor's appointment for July 5. That follow-up may be the first appointment that I miss. We'll be checking on that appointment date next week while we're there for that treatment.
July 4th looks to be an interesting day, she actually has a chemo treatment scheduled, and a follow-up doctor's appointment for July 5. That follow-up may be the first appointment that I miss. We'll be checking on that appointment date next week while we're there for that treatment.
20 days later...
Had a second dose of the AC treatment, everything has been 1000% better. Since they found the right combo of drugs to help with her side effects this week has been such a complete difference from the last treatment. She's been able to continue eating as normal, feeling much stronger, actually looking forward to this next week. We actually cooked at home for the first time in weeks, and the smell didn't bother her!
Next treatment has been moved to July 5th, and we're set on medications for that one too. Final chemo treatment will be either July 25 or 26, she really wants the 25th. July 31 is the next appointment with the surgeon.
Surprisingly she's actually happy about the super short hair right now, much cooler in the 100F heat that we've had, but hasn't worn one of her wigs in weeks now. It's just too hot for them.
Had a second dose of the AC treatment, everything has been 1000% better. Since they found the right combo of drugs to help with her side effects this week has been such a complete difference from the last treatment. She's been able to continue eating as normal, feeling much stronger, actually looking forward to this next week. We actually cooked at home for the first time in weeks, and the smell didn't bother her!
Next treatment has been moved to July 5th, and we're set on medications for that one too. Final chemo treatment will be either July 25 or 26, she really wants the 25th. July 31 is the next appointment with the surgeon.
Surprisingly she's actually happy about the super short hair right now, much cooler in the 100F heat that we've had, but hasn't worn one of her wigs in weeks now. It's just too hot for them.
I saw the same thing on mobile, but on the computer it's visible. Her video is posted to "public" on facebook, though, so it shouldn't be happening at all, and loading this page up in incognito mode, it does show up on the computer even though I'm clearly not logged into facebook.
So I'm guessing there's something weird going on with facebook and safari on iOS mobile devices, alternately the forum embedding code has an issue and interacting with facebook incorrectly for mobile or iOS devices.
Here's the direct link to her video, click it and see if it loads and plays.
There’s also the fact that, for whatever reason, all my Internet at work today is being routed through an IP in France. Yes, that France. So I’m laying odds that may be a factor, too.
Such a day I’m having.
—Patrick
I'm actually much better now, I posted that video, and one on my feed, from the hospital doing a facebook live. I had both of our phones going to get it. Yeah, pretty much both of our facebook accounts are wide open, nothing there that needs to be hidden (except for my casual gaming posts that only I can see) from anyone, as we don't post anything that would have to be hidden from anyone.
The verse that she recited was Psalms 118:24 "This is the day which the Lord hath made; we will rejoice and be glad in it." It was the verse that her grandfather said everyday, and she was very close to him, and that we both try to live each day.
The verse that she recited was Psalms 118:24 "This is the day which the Lord hath made; we will rejoice and be glad in it." It was the verse that her grandfather said everyday, and she was very close to him, and that we both try to live each day.
We have two possible dates for surgery, August 27 or August 29. We'll find out for sure this coming Tuesday, August 7. Labs for the 27th would be on the 24th, labs for the 29th would be on the 28th. This is the next step, and will take anywhere between 3-8 weeks for recovery and then 4 weeks of radiation treatment twice daily.
Okay, the date is set. August 29. Radical Mastectomy of the left breast including nipple, and lymph nodes from under the left arm. Pre-op stuff will be August 28, spend the night in hotel, surgery on the 29th and an overnight stay in the hospital. We will get to come home on August 30, assuming all goes as planned with the surgery. Probably 2-3 weeks of recovery with the drains in, and another 2-3 weeks before radiation therapy will start.
Everything looked good today, the oncology department released her from treatment, of course we'll be checking in on a regular basis because of tracking her progress. Basically from here on out I'm just losing pay for missing work, but we can handle that, I'm saving my last 5 days of paid time off to use for a week while she's in Houston for radiation therapy.
We've made it through the toughest part, the chemotherapy, and from here out it's just going to be healing from "injury" instead of something making her sick.
Everything looked good today, the oncology department released her from treatment, of course we'll be checking in on a regular basis because of tracking her progress. Basically from here on out I'm just losing pay for missing work, but we can handle that, I'm saving my last 5 days of paid time off to use for a week while she's in Houston for radiation therapy.
We've made it through the toughest part, the chemotherapy, and from here out it's just going to be healing from "injury" instead of something making her sick.
Surgery was a success. Everything went as smoothly as possible. I now have a left-handed Amazon for a wife.
Surgery started at 9am yesterday (8-29) and was finished right at noon. Got back to see her in recovery around 1pm. They got her moved into a room by 2pm and just about everyone else left at that time. Were released from the hospital about 8am today, drove to get a bite of breakfast (not hospital food) and headed home, got here around 11:30am. I'm now thinking about a nap, because I've gotten around 10 hours of sleep in the past three nights.
Surgery started at 9am yesterday (8-29) and was finished right at noon. Got back to see her in recovery around 1pm. They got her moved into a room by 2pm and just about everyone else left at that time. Were released from the hospital about 8am today, drove to get a bite of breakfast (not hospital food) and headed home, got here around 11:30am. I'm now thinking about a nap, because I've gotten around 10 hours of sleep in the past three nights.
After dealing with her drains today, I've still got my iron stomach.
I've dealt with the smell (kinda fresh meat to me) and seeing strange little things floating in there. We have to empty her drains into a paper cup type measure and keep track of how much discharge that she had from each drain (2 drains total) and make sure its the color and that we're not getting a foul/stinky odor from the discharge. She'll be able to get the drains removed in about 2 weeks when we go back to the hospital.
This is basically what it looks like... only on the left.
This is basically what it looks like... only on the left.