Dis Breast Cancer Survivors Part IV - GAGWTA

[Pea-n-Me]

Started with the taxol today. I was nervous to get started because of what I've read of people having reactions within the first few mins, someone here did sorry I can't remember who and scrolled back some but didn't see it. Anyways I did not thankfully and other than the coughing fit I had during the session everything went textbook. I have had major congestion for several weeks and while that seems to be clearing I now have post nasal drip which has resulted in some vicious coughing fits. I felt so embarrassed in the infusion room- it went on for a good 10 mins I just wanted to run and hide. They're really bad at night as soon as I try to be on any position other that propped straight up I start coughing. I am really hoping it ends soon.

I feel like the last 2 weeks were a bust. I was fairly nauseous from the last dose of ACT for a good week, and nothing is appetizing (I lost 5 pounds). The only things that taste good/normal is milk and peanut butter crackers. I eat other things because i know i have to but they taste like nothing. I have a sicky sweet taste going on not metallic. My kids were both sick with whatever is floating around their school- I think it's norovirus. What's the deal with kids standing by the bed in the middle of the night saying mom I'm throwing up and sure enough it's everywhere. Had my share of that these last 2 weeks.

@3threebabies, when you had dry eyes were they burning? I have been able to get my contacts in for a few hours a day but man do my eyes burn. I use those systane drops but I don't think they really do anything. When I saw the eye doctor she said I could have developed an allergy to this brand of contact since I've used them for so many years to maybe try a new brand. Idk.

@Grace&Carolinesmom, congrats on finishing treatment . Did you ring the bell? I see it on the wall at my place, saw one lady ring it so far and it was pretty anticlimactic. Did you get cleared to have the port removed? Oh how I can't wait for that day! I have a surgery date of July 26th for the double mastectomy and reconstruction so I imagine my port comes out thay day. Bye port.

I've been reading a lot about the ovary removal surgery and hysterectomy, and recovery. My oncologist says if in 4 weeks of the taxol my numbers are good she wants me to get this over with. Idk why but I am do on the fence about this. I am like torn between the whole thing or just the ovaries and tubes.

As far as other symptoms, I see that the nail beds on my thumbs are turning dark. I'm going to watch thay closely not that I can stop it but I keep them painted with the clear polish and use ice packs during treatment. Someone suggested frozen wash cloths a few times a day.

Saw a friend over the weekend and confessed what I'm going through. Turns out her bestie has brca1 positive too and has been through all of this twice. She finally had the double mastectomy and down stairs done and she is doing great. My friend is planning for the 3 of us to get together for coffee this weekend so I can pick her brain. I like my center and all, it's quiet, but I feel like it's too quiet. I read about all these informative centers with tons of resources but unless I read about it and ask the nurses they don't say much. I think it'll help to sit with someone and really ask what to expect.

I have also been very lazy lately. I have so many things I want to do, like make photo books for every year since the kids were born, but I have done nothing. I'm in a funk.

Wow this post got really long, sorry about that. I guess I should go write all of this in my journal now lol.

Please don’t apologize, this is what this is here for and we’ve all done it! I’m glad you can cross the AC off your list. I remember at that point all I really felt like was Pepsi and potato chips. So bad for me but that’s all I could manage and figured it was better than nothing. Milk and peanut butter crackers sound a little healthier anyway! Do they have you on any type of PPI like omeprazole (Prilosec)? Sometimes acid reflux can cause a cough like that, so it might be worth a try if they ok it. Be sure to take it on an empty stomach in the morning, and before you eat if you take a dose in the afternoon.

I can understand why you have mixed feelings on taking out your lady parts. It’s not always easy to do. I didn’t take mine out during cancer treatment, but had to later on, and it was still not something I really cared to do (even though I was sick from pain and bleeding it was pretty bad. It’s pretty well known that women get emotional about their uterus, especially, as it’s so connected to their children). My oncologist insisted on my ovaries coming out so basically everything came out. The biggest issue was the surgical menopause that came on pretty quickly. You have enough on your plate so I won’t add to that, but let me know if you have any questions about that.

I’m glad you’re meeting up with someone who’s been through this, too. I felt like that was very therapeutic for me. The medical teams aren’t always great at emotional support, which pains me to say since I am a nurse. I don’t work in oncology, but I do work with patients just diagnosed with devastating illnesses, and when I can, I try to sit down and ask something like, “How are you doing with all this?”, but not everyone cares to talk about it, and I don’t always have a lot of time to sit, unfortunately. I, personally, got a lot of support on my own, though, from friends, or friends of friends, who’d been through it all before me, and a cancer support center I went to. I also came up with the idea for this thread because I wanted to connect with others who understood, as well, way back in 2005! So as yucky as the subject is, it’s been nice to connect with so many others who’ve been down this road, too.

 

[Grace&Carolinesmom]

Calecakes - Sorry to hear you are having nausea and taste issues. I had(have) taste issues as well. If peanut butter tastes good, maybe you could make some chicken and rice noodles with peanut sauce? Did you get any meds for nausea?

I had my uterus out back in 2001 during an emergency c-section for DD#2. It was a very emotional time for me knowing I could never have any more children. I elected to keep my cervix so I still get pap smears. The chemo has thrown me into menopause and I get hot flashes day and night.

I did not ring the bell but the nurses offered. IDK....It didn't feel right to me not knowing the situations of the other patients there. I have sometimes overheard very sad situations with other patients while I was getting chemo. I have to say, it felt so weird walking out after my last chemo treatment. I almost cried knowing I would miss the great nurses.

Happy to hear you will be able to share experiences with another cancer survivor in a similar situation. That will be a supportive friend for life.

 

[Grace&Carolinesmom]

So....my last chemo was on March 25. YAY!!! Of course it couldn't be without some drama. On the following Tuesday, I developed a blood clot in my neck and my right arm is swollen and discolored. My insurance kept denying the blood thinners my doctor was prescribing but finally approved an injectable(twice a day in my abdomen). On Wednesday this week, my insurance company FINALLY approved the original blood thinner. My follow-up ultrasound on Wed showed my clot had not changed much. The IR is going to check back with me in 2 weeks. If it isn't better, they may go in and retrieve the blood clot. I also had my port removed on Wednesday(busy day...lol). So glad that is out and the IR thinks it will help with the blood clot too.

I met yesterday with the radiation doctor. She was very informative and calmed my fears. I will have a scanning/planning CT on the 18th and my radiation treatments will start on the 25th. It will be 20 treatments so 4 weeks of radiation.

I hope everyone is doing well. Crossing my fingers for some nice weather soon so we can spend some time outside!!

 

[Pea-n-Me]

So....my last chemo was on March 25. YAY!!! Of course it couldn't be without some drama. On the following Tuesday, I developed a blood clot in my neck and my right arm is swollen and discolored. My insurance kept denying the blood thinners my doctor was prescribing but finally approved an injectable(twice a day in my abdomen). On Wednesday this week, my insurance company FINALLY approved the original blood thinner. My follow-up ultrasound on Wed showed my clot had not changed much. The IR is going to check back with me in 2 weeks. If it isn't better, they may go in and retrieve the blood clot. I also had my port removed on Wednesday(busy day...lol). So glad that is out and the IR thinks it will help with the blood clot too.

I met yesterday with the radiation doctor. She was very informative and calmed my fears. I will have a scanning/planning CT on the 18th and my radiation treatments will start on the 25th. It will be 20 treatments so 4 weeks of radiation.

I hope everyone is doing well. Crossing my fingers for some nice weather soon so we can spend some time outside!!

So sorry to hear that happened to you! You sound like you are coping really well with it all! that things continue to improve and for better weather soon!

 

[ZellyB]

Started with the taxol today. I was nervous to get started because of what I've read of people having reactions within the first few mins, someone here did sorry I can't remember who and scrolled back some but didn't see it. Anyways I did not thankfully and other than the coughing fit I had during the session everything went textbook. I have had major congestion for several weeks and while that seems to be clearing I now have post nasal drip which has resulted in some vicious coughing fits. I felt so embarrassed in the infusion room- it went on for a good 10 mins I just wanted to run and hide. They're really bad at night as soon as I try to be on any position other that propped straight up I start coughing. I am really hoping it ends soon.

I feel like the last 2 weeks were a bust. I was fairly nauseous from the last dose of AC for a good week, and nothing is appetizing (I lost 5 pounds). The only things that taste good/normal is milk and peanut butter crackers. I eat other things because i know i have to but they taste like nothing. I have a sicky sweet taste going on not metallic. My kids were both sick with whatever is floating around their school- I think it's norovirus. What's the deal with kids standing by the bed in the middle of the night saying mom I'm throwing up and sure enough it's everywhere. Had my share of that these last 2 weeks.

@3threebabies, when you had dry eyes were they burning? I have been able to get my contacts in for a few hours a day but man do my eyes burn. I use those systane drops but I don't think they really do anything. When I saw the eye doctor she said I could have developed an allergy to this brand of contact since I've used them for so many years to maybe try a new brand. Idk.

@Grace&Carolinesmom, congrats on finishing treatment . Did you ring the bell? I see it on the wall at my place, saw one lady ring it so far and it was pretty anticlimactic. Did you get cleared to have the port removed? Oh how I can't wait for that day! I have a surgery date of July 26th for the double mastectomy and reconstruction so I imagine my port comes out thay day. Bye port.

I've been reading a lot about the ovary removal surgery and hysterectomy, and recovery. My oncologist says if in 4 weeks of the taxol my numbers are good she wants me to get this over with. Idk why but I am do on the fence about this. I am like torn between the whole thing or just the ovaries and tubes.

As far as other symptoms, I see that the nail beds on my thumbs are turning dark. I'm going to watch thay closely not that I can stop it but I keep them painted with the clear polish and use ice packs during treatment. Someone suggested frozen wash cloths a few times a day.

Saw a friend over the weekend and confessed what I'm going through. Turns out her bestie has brca1 positive too and has been through all of this twice. She finally had the double mastectomy and down stairs done and she is doing great. My friend is planning for the 3 of us to get together for coffee this weekend so I can pick her brain. I like my center and all, it's quiet, but I feel like it's too quiet. I read about all these informative centers with tons of resources but unless I read about it and ask the nurses they don't say much. I think it'll help to sit with someone and really ask what to expect.

I have also been very lazy lately. I have so many things I want to do, like make photo books for every year since the kids were born, but I have done nothing. I'm in a funk.

Wow this post got really long, sorry about that. I guess I should go write all of this in my journal now lol.

Edited to fix ACT to AC

I'm sorry to hear about your difficulties. I remember a period of time when I was going through chemo the first time and peanut M&Ms were about the only think I could stand to eat. Sometimes you just have to get through with whatever works though.

I can understand your conflicted feelings about the hysterectomy etc. Even though you know your situation, it doesn't make committing to a major surgery (and one that we as women tend to tie up with our identity) is an easy thing to do.

When I was on doxyrubicin, they used to ice my hands and feet during infusions. That was designed to help keep the skin on my hands and feet from peeling, but maybe it would help with nail beds?

I'm glad you have someone else you can talk with. Doctors and nurses are great resources, but sometimes talking to someone who has been there as a patient is an even better perspective.

So....my last chemo was on March 25. YAY!!! Of course it couldn't be without some drama. On the following Tuesday, I developed a blood clot in my neck and my right arm is swollen and discolored. My insurance kept denying the blood thinners my doctor was prescribing but finally approved an injectable(twice a day in my abdomen). On Wednesday this week, my insurance company FINALLY approved the original blood thinner. My follow-up ultrasound on Wed showed my clot had not changed much. The IR is going to check back with me in 2 weeks. If it isn't better, they may go in and retrieve the blood clot. I also had my port removed on Wednesday(busy day...lol). So glad that is out and the IR thinks it will help with the blood clot too.

I met yesterday with the radiation doctor. She was very informative and calmed my fears. I will have a scanning/planning CT on the 18th and my radiation treatments will start on the 25th. It will be 20 treatments so 4 weeks of radiation.

I hope everyone is doing well. Crossing my fingers for some nice weather soon so we can spend some time outside!!

I'm so glad that you are done with chemo!! YAY! But so sorry to hear about your blood clot and that's scary! Insurance companies are the devil, I swear. Best of luck on your radiation treatments. I hope they go well and you tolerate them well.

 

[ZellyB]

So, some updates from me. I think when last I posted I mentioned I was going to have an ECHO to be sure the doxyrubicin wasn't causing any CHF. Good news! My heart was completely normal. I think my oncologist was even a bit surprised by that. I guess all those years that I ran those half-marathons and marathons may have paid off in a strong heart. BUT, that said, he did decide to switch me to Trodelvy (sacituzumab govitecan). It's a chemo conjugate with the chemo attached to an antibody to try and get it more directed to cancer cells and less systemic damage. It's designed to be taken by infusion on Day 1 and then Day 8 during a 21-day cycle. I had the first treatment and was pleasantly surprised that I didn't feel as bad immediately after. Unfortunately there was some delayed response with some nausea/vomitting and SEVERE fatigue. When I went in on day 8 for the second dose, my white count was obliterated, so we had to skip. My doctor didn't give me Neupogen like he had been doing (maybe to see how I handled it?), so I'm sure he will this next time. I hope with that added that my white count can tolerate this treatment. It has shown good activity against TnMBC, so I'm really hoping it will work for me.

Since the doxyrubicin was still working and I was tolerating it, if this one doesn't work out, we can go back to the doxy if need be, but I'm really hoping this will work out.

Lastly, the Trodelvy finally did in my hair. It had held on through the two prior treatments, but this one was the final blow (not that my hair was looking any too healthy, but still). So, it's back to scarves and wigs for me again. I don't mind to run around in public in a scarf, but don't have the nerve to just go bald. I always admire those women who do! I typically wear a wig to work and then scarves for some other things like doctor appointments or the grocery store.

I've got a friend at work who wants me to buy a few different wigs and name them (for any Schitt's Creek fans - like Moira did), so thinking of going back to the wig shop this afternoon to get another. I've got two so far. One is very similar to my natural hair and the other a big longer and a different color. I need to go by to get the longer one a bang trim, so perhaps I'll buy another. Gotta get some little pleasures out of this where you can, you know?

 

[Grace&Carolinesmom]

ZellyB - Glad to hear your Echo went well Hopefully the new chemo will level out and do its job without so many side effects.

I just started going to the store again (YAY!!) and I have just been wearing a softie head cover. I have some scarves I may wear once its a little warmer here too. I have two wigs but haven't worn either yet,,,lol. It seems like too much work for store runs but I will definitely wear one when I go out to a restaurant. I need to buy some new makeup as mine is so old. Haven't worn makeup since maybe.....June???

 

[3threebabies]

@CaleCakes, sorry. but I don’t remember much about my eyes burning. I do remember eyes felt very dry and scratchy and blurry vision. It didn’t feel like regular allergy eyes, so they may have burned some.

Glad you finished chemo @Grace&Carolinesmom.

 

[Pea-n-Me]

ZellyB - Glad to hear your Echo went well Hopefully the new chemo will level out and do its job without so many side effects.

I just started going to the store again (YAY!!) and I have just been wearing a softie head cover. I have some scarves I may wear once its a little warmer here too. I have two wigs but haven't worn either yet,,,lol. It seems like too much work for store runs but I will definitely wear one when I go out to a restaurant. I need to buy some new makeup as mine is so old. Haven't worn makeup since maybe.....June???

Do they still have the Look Good, Feel Better program through the American Cancer Society? If so, you can get a lot of nice, free makeup! I also noticed that Walgreen’s has a similar program, too. I saw a sign in the store not too long ago. Something to look into!

 

[Pea-n-Me]

So, some updates from me. I think when last I posted I mentioned I was going to have an ECHO to be sure the doxyrubicin wasn't causing any CHF. Good news! My heart was completely normal. I think my oncologist was even a bit surprised by that. I guess all those years that I ran those half-marathons and marathons may have paid off in a strong heart. BUT, that said, he did decide to switch me to Trodelvy (sacituzumab govitecan). It's a chemo conjugate with the chemo attached to an antibody to try and get it more directed to cancer cells and less systemic damage. It's designed to be taken by infusion on Day 1 and then Day 8 during a 21-day cycle. I had the first treatment and was pleasantly surprised that I didn't feel as bad immediately after. Unfortunately there was some delayed response with some nausea/vomitting and SEVERE fatigue. When I went in on day 8 for the second dose, my white count was obliterated, so we had to skip. My doctor didn't give me Neupogen like he had been doing (maybe to see how I handled it?), so I'm sure he will this next time. I hope with that added that my white count can tolerate this treatment. It has shown good activity against TnMBC, so I'm really hoping it will work for me.

Since the doxyrubicin was still working and I was tolerating it, if this one doesn't work out, we can go back to the doxy if need be, but I'm really hoping this will work out.

Lastly, the Trodelvy finally did in my hair. It had held on through the two prior treatments, but this one was the final blow (not that my hair was looking any too healthy, but still). So, it's back to scarves and wigs for me again. I don't mind to run around in public in a scarf, but don't have the nerve to just go bald. I always admire those women who do! I typically wear a wig to work and then scarves for some other things like doctor appointments or the grocery store.

I've got a friend at work who wants me to buy a few different wigs and name them (for any Schitt's Creek fans - like Moira did), so thinking of going back to the wig shop this afternoon to get another. I've got two so far. One is very similar to my natural hair and the other a big longer and a different color. I need to go by to get the longer one a bang trim, so perhaps I'll buy another. Gotta get some little pleasures out of this where you can, you know?

Hoping things work out as you want them to, @ZellyB! I’m glad your echo was good!

 

[Grace&Carolinesmom]

Do they still have the Look Good, Feel Better program through the American Cancer Society? If so, you can get a lot of nice, free makeup! I also noticed that Walgreen’s has a similar program, too. I saw a sign in the store not too long ago. Something to look into!

I have never heard of that but will definitely look into it. Thanks!!

 

[Pea-n-Me]

Looks like they are still around! I remember getting a really nice box of makeup products.

Look Good Feel Better

Feel More Like You - Walgreen’s

 

[3threebabies]

Do they still have the Look Good, Feel Better program through the American Cancer Society? If so, you can get a lot of nice, free makeup! I also noticed that Walgreen’s has a similar program, too. I saw a sign in the store not too long ago. Something to look into!

I got a lot of really good makeup, moisturizer, etc. They also provided eyebrow kits. I may or may not still have a 10yo pink Estée Lauder lipstick from LGFB that I use occasionally…

 

[CaleCakes]

So I'm feeling a little upset with my treatment and the oncologist office these days. First I'll talk about the cough that I have had over 2 months now. Pea-n-me you mentioned the cough could be acid reflux or something along those line. I am not on any med other than the pepcid they give me as a premed. I have mentioned this cough to the doc numerous times and finally 2 weeks ago she said she would order a chest CT and an xray stat because I was also having neck pain on the side of the port. I have still yet to be contacted about the tests. I saw her last week and reminded her- crickets. Sent a message to the portal today- no response. I'm so tired of coughing. About a month ago I got a letter saying the oncologist is leaving the practice mid June so I figured my last session is scheduled for June 22 so they could stick me with someone else for a week and I'd be done with it. Now I get a call today saying she isn't seeing patients after May 12 and I need to either go to their other location which is an hour and a half from me or find a new practice . I feel like I'm at a loss. Do I suck it up for the next 8 weeks and drive the 3 hours round trip, or do I find a new practice in the middle of the game? I have read some pretty poor reviews of other practices in my area. What would you all do?
In symptom world I have had some random palm itching following treatment last week, pain in my knee, crazy sweating ( was told I'm going unto menopause from the meds), I barely have eyes brows and eye lashes left, and I have about 5 things I can tolerate eating. I know this sounds like a lot of complaining I just feel like I'm so over it at this point which I'm sure is normal.

 

[3threebabies]

So I'm feeling a little upset with my treatment and the oncologist office these days. First I'll talk about the cough that I have had over 2 months now. Pea-n-me you mentioned the cough could be acid reflux or something along those line. I am not on any med other than the pepcid they give me as a premed. I have mentioned this cough to the doc numerous times and finally 2 weeks ago she said she would order a chest CT and an xray stat because I was also having neck pain on the side of the port. I have still yet to be contacted about the tests. I saw her last week and reminded her- crickets. Sent a message to the portal today- no response. I'm so tired of coughing. About a month ago I got a letter saying the oncologist is leaving the practice mid June so I figured my last session is scheduled for June 22 so they could stick me with someone else for a week and I'd be done with it. Now I get a call today saying she isn't seeing patients after May 12 and I need to either go to their other location which is an hour and a half from me or find a new practice . I feel like I'm at a loss. Do I suck it up for the next 8 weeks and drive the 3 hours round trip, or do I find a new practice in the middle of the game? I have read some pretty poor reviews of other practices in my area. What would you all do?
In symptom world I have had some random palm itching following treatment last week, pain in my knee, crazy sweating ( was told I'm going unto menopause from the meds), I barely have eyes brows and eye lashes left, and I have about 5 things I can tolerate eating. I know this sounds like a lot of complaining I just feel like I'm so over it at this point which I'm sure is normal.

I am so sorry. That is a lot to deal with at this point.

I would go ahead and meet with a local oncologist and see if you connect. It might help you make the decision whether the commute is worth it. Just realize you will have regular followups for several years—likely at least quarterly. You will need new medical oncologist unless you chose to and/or can follow the current one.

I hope your cough is not a sign of something sinister and simply one of many treatment side effects. I would like to think that even a distracted onco would react quickly with regard to the scans. Perhaps you can reach out to the person in the office who deals with scans and precerts and then follow up with your insurance if there is an issue with approval. Hopefully

 

[Pea-n-Me]

So I'm feeling a little upset with my treatment and the oncologist office these days. First I'll talk about the cough that I have had over 2 months now. Pea-n-me you mentioned the cough could be acid reflux or something along those line. I am not on any med other than the pepcid they give me as a premed. I have mentioned this cough to the doc numerous times and finally 2 weeks ago she said she would order a chest CT and an xray stat because I was also having neck pain on the side of the port. I have still yet to be contacted about the tests. I saw her last week and reminded her- crickets. Sent a message to the portal today- no response. I'm so tired of coughing. About a month ago I got a letter saying the oncologist is leaving the practice mid June so I figured my last session is scheduled for June 22 so they could stick me with someone else for a week and I'd be done with it. Now I get a call today saying she isn't seeing patients after May 12 and I need to either go to their other location which is an hour and a half from me or find a new practice . I feel like I'm at a loss. Do I suck it up for the next 8 weeks and drive the 3 hours round trip, or do I find a new practice in the middle of the game? I have read some pretty poor reviews of other practices in my area. What would you all do?
In symptom world I have had some random palm itching following treatment last week, pain in my knee, crazy sweating ( was told I'm going unto menopause from the meds), I barely have eyes brows and eye lashes left, and I have about 5 things I can tolerate eating. I know this sounds like a lot of complaining I just feel like I'm so over it at this point which I'm sure is normal.

I remember feeling a lot of this type of fatigue and frustration, too, with various aches and pains that cause worry. I would hope that if the CT showed anything worrisome, that it would’ve been flagged pretty quickly, but that’s not always foolproof, as messages can get missed on rare occasion, especially if a doctor or caregiver is in transition. Can you see your results on the portal? Is there a team member like a NP who is staying that you can talk to more about it? Two things they watch for with a port are a blood clot and infection. So no fevers or anything, right?

Coughs can be tricky. There are so many things that could cause a cough. Right now lots of people have coughs due to seasonal pollens and allergies - green is everywhere all over cars and such. Some medications can cause a cough. When getting chemo there is always a concern for something like heart failure (CHF as @ZellyB mentioned above. I can’t remember if you said you’ve had an echocardiogram. But an XRay would also show a large cardiac silhouette, so again, that would likely have been flagged if that were the case). But continue to follow up about it. Sometimes if they don’t hear back they think things are better. With the acid reflux cough issue they usually start you on something you take every morning when you first get up, or even twice a day, on an empty stomach if possible. I had to take something (omeprazole/Prilosec) twice a day myself during that period during/after chemo as I had awful pain around my biliary tree. It helped somewhat, but that caused me a lot of worry, plus I had lots of different tests for it with nothing ever found.

I actually had to change oncologists too when my own oncologist came down with a medical situation herself and had to retire abruptly. Fortunately I was able to stay with one in the same practice. My trips were about an hour to see them, but I tried to go after work if possible so as not to have to make a special trip. I could’ve found one closer to me, but I felt good being at this particular practice. A three hour round trip is a long time when you’re so fatigued as it is. Is there anyone who could drive you so you could at least relax on the trip? At least temporarily, until you can take the time to find someone closer to you, who is good, and who you can stay with long term? I’m almost 20 yrs out and I still have to see my oncologist yearly. I like to keep up with it because if I have a scare, which I do now and then, I have to go see her, so I don’t want to not see her and then expect to show up just for emergencies. She’s been really nice, though, even when I’ve missed some follow up. (It‘s so challenging keeping up w everything especially when dealing with family health as well as your own.) I think people post reviews a lot when they are unhappy, but not always when they’re happy, kwim? So I would research who the best oncologist is in your area and try to get into that practice maybe, eventually. But for now I’d probably suck it up and just do what you have to do to finish up with the team that’s been managing your care thus far. Hang in there, you’re doing great and the end of chemo is in sight! It’s normal to feel the way you’re feeling, and you have the right to! It’s a lot.

 

[Grace&Carolinesmom]

So I'm feeling a little upset with my treatment and the oncologist office these days. First I'll talk about the cough that I have had over 2 months now. Pea-n-me you mentioned the cough could be acid reflux or something along those line. I am not on any med other than the pepcid they give me as a premed. I have mentioned this cough to the doc numerous times and finally 2 weeks ago she said she would order a chest CT and an xray stat because I was also having neck pain on the side of the port. I have still yet to be contacted about the tests. I saw her last week and reminded her- crickets. Sent a message to the portal today- no response. I'm so tired of coughing. About a month ago I got a letter saying the oncologist is leaving the practice mid June so I figured my last session is scheduled for June 22 so they could stick me with someone else for a week and I'd be done with it. Now I get a call today saying she isn't seeing patients after May 12 and I need to either go to their other location which is an hour and a half from me or find a new practice . I feel like I'm at a loss. Do I suck it up for the next 8 weeks and drive the 3 hours round trip, or do I find a new practice in the middle of the game? I have read some pretty poor reviews of other practices in my area. What would you all do?
In symptom world I have had some random palm itching following treatment last week, pain in my knee, crazy sweating ( was told I'm going unto menopause from the meds), I barely have eyes brows and eye lashes left, and I have about 5 things I can tolerate eating. I know this sounds like a lot of complaining I just feel like I'm so over it at this point which I'm sure is normal.

I am so sad to hear that you are not getting responsive care and being put in a position to choose a new doctor/practice or drive a long ways for treatment.

I personally would change practices. As previously mentioned, you will need ongoing care for the rest of your life. Search online first to find doctors with medical qualifications and personal philosophy that meet your needs and then call their offices to set up a consultation. I would also ask around to friends, family and especially anyone you know in the medical community who they would recommend.

For the cough, if you think its related to GERD, take OTC omeprazole twice daily to see if it helps while you are sorting out your oncology practice situation. I am on pantoprazole twice daily and I take pepcid before bed.

I wish you lived near me in Wisconsin because my doctors and nurses are outstanding.

Your other symptoms are quite familiar to me. I am so tired of multiple hot flashes daily .....

Big hugs!! Keep us updated.

 

[CaleCakes]

Thank you for the responses, caring thoughts, and suggestions. About the chest CT I haven't even had it yet- no one has called to schedule it. I didn't even give any thought that it could be my insurance I haven't had any issues or delays thus far. I can certainly look into that. I didn't even get a response on the patient portal since posting my question/concern on Monday. I really don't know what is going on with this office but it's frustrating and makes me a little nervous. In the meantime I am going to try some of the otc stuff for gerd or reflux. It feels more like phlegm in my throat than in my lungs. The spit up is clear but it's with every cough. Tmi probably.

Last week when I went to treatment my port was a little clogged- that was a first for me. It took the nurse a few tries and pushes of saline or whatever they do to get blood out. She said every port she accessed so far that week had been clogged. There was an older man next to me and his never cleared the whole time I was there. He had to have some other med put in to help clear it but that didn't happen in the 3 hours I was there. Poor guy you could tell he was over it.

I did do a few things today: I reached out to the surgeon and her assistant who I have felt a connection with since day one. They are in the same practice at med onco doc but they are super responsive and always provide feedback. The assistant and doc put together a list of 5 or so other med oncologist they would recommend, and said they would support any decision and would expedite my record if I went elsewhere. I am super thankful for them and will take some time this week to go through the list. My current commute to treatment is about 1 hour so another 30 mins isn't the end of the world however the extra 30 mins would have me going through a major city with major traffic issues. I can picture that getting old real fast even if for only 6 weeks or so. I could have my mom bring me for company but to be honest she took me a few times when I first started the taxol and I found it to be more annoying than helpful. I know that sounds terrible. I don't get much alone time to just be with my thoughts and have a pity party if I want to so I feel like my commutes to treatment are better off alone. Plus no one can come in and I feel bad having people wait on me.

I also reached out to the lady I met through a friend a few weeks ago to ask of she would recommend her oncologist or anyone else. She sent me her docs info so I will look into that.

Tomorrow I see my currnt medical oncology for the last time as it seems. I am going to tell her I'm upset and frustrated. I doubt she can say anything good or bad about leaving the practice- I worked for a doc office in the past and when docs left they had some clause they signed to not tell patients. I get it but boy does it make patients upset. I'm going to ask her flat out if I should walk or run lol. Of course I'm going to ask her why the CT hasn't been ordered. I am also going to ask her to put me out of work for a few weeks. Some things have happened in the last few weeks that aren't in line with why I work for them in the first place. Add that now to the stress of finding a new doctor I think I need a little break and reevaluate if I need to move on.

Real quick in other news I had chicken and mashed potatoes for dinner. Not only was it delightful but I don't have a massive stomach ache from it! I call that a success!

 

[Pea-n-Me]

Thank you for the responses, caring thoughts, and suggestions. About the chest CT I haven't even had it yet- no one has called to schedule it. I didn't even give any thought that it could be my insurance I haven't had any issues or delays thus far. I can certainly look into that. I didn't even get a response on the patient portal since posting my question/concern on Monday. I really don't know what is going on with this office but it's frustrating and makes me a little nervous. In the meantime I am going to try some of the otc stuff for gerd or reflux. It feels more like phlegm in my throat than in my lungs. The spit up is clear but it's with every cough. Tmi probably.

Last week when I went to treatment my port was a little clogged- that was a first for me. It took the nurse a few tries and pushes of saline or whatever they do to get blood out. She said every port she accessed so far that week had been clogged. There was an older man next to me and his never cleared the whole time I was there. He had to have some other med put in to help clear it but that didn't happen in the 3 hours I was there. Poor guy you could tell he was over it.

I did do a few things today: I reached out to the surgeon and her assistant who I have felt a connection with since day one. They are in the same practice at med onco doc but they are super responsive and always provide feedback. The assistant and doc put together a list of 5 or so other med oncologist they would recommend, and said they would support any decision and would expedite my record if I went elsewhere. I am super thankful for them and will take some time this week to go through the list. My current commute to treatment is about 1 hour so another 30 mins isn't the end of the world however the extra 30 mins would have me going through a major city with major traffic issues. I can picture that getting old real fast even if for only 6 weeks or so. I could have my mom bring me for company but to be honest she took me a few times when I first started the taxol and I found it to be more annoying than helpful. I know that sounds terrible. I don't get much alone time to just be with my thoughts and have a pity party if I want to so I feel like my commutes to treatment are better off alone. Plus no one can come in and I feel bad having people wait on me.

I also reached out to the lady I met through a friend a few weeks ago to ask of she would recommend her oncologist or anyone else. She sent me her docs info so I will look into that.

Tomorrow I see my currnt medical oncology for the last time as it seems. I am going to tell her I'm upset and frustrated. I doubt she can say anything good or bad about leaving the practice- I worked for a doc office in the past and when docs left they had some clause they signed to not tell patients. I get it but boy does it make patients upset. I'm going to ask her flat out if I should walk or run lol. Of course I'm going to ask her why the CT hasn't been ordered. I am also going to ask her to put me out of work for a few weeks. Some things have happened in the last few weeks that aren't in line with why I work for them in the first place. Add that now to the stress of finding a new doctor I think I need a little break and reevaluate if I need to move on.

Real quick in other news I had chicken and mashed potatoes for dinner. Not only was it delightful but I don't have a massive stomach ache from it! I call that a success!

Honestly it sounds more like allergies. I hear the same thing from those I live with who all have seasonal allergies. They’ve been complaining about the “phlegm in their throats”. (And green pollen is everywhere you look outside.) Have you ever taken something like a daily Zyrtec or Claritin? Check with your doc when you see them. And plenty of fluids to keep that lump of pollen as liquefied as possible. (More TMI lol)

I totally get it about someone going with you. I had to have someone take me and usually it was my DH, but I used to send him out for a long walk and lunch so I could be alone while getting my treatment. I had to try to relax and focus (meditate; put myself elsewhere; or just veg out on the internet) and having someone there was too much of a distraction for me, I felt like I had to entertain them or felt bad if they were bored, etc. The worst time was bringing a nurse friend who was antsy when they couldn’t get an IV in. Never brought her again, lol. I can’t imagine how it is with Covid precautions. I think it’s a great idea for you to take some time off!

I hope you get some answers soon.

 

[ZellyB]

@CaleCakes I hope you are able to find a new onco that is more responsive to your needs. Oncologist offices need to function at a higher standard in my opinion and non-responsiveness if just unacceptable. I hope you are able to get some relief from the other symptoms you are having.

We are finally able to have someone with us again during treatment. I actually like having someone there to serve as a distraction while I get mine. But, everyone is different in how they have to mentally handle getting treatments.