New Nurse Practitioner

[LexieCat]

I knew that my NP, Lindsay, who sees me for all my oncology visits where I don't see my doctor (2 out of 3 visits, IOW) was about to go out on maternity leave. I totally LOVE Lindsay--she's very knowledgeable about most questions I have and generally responds to any questions sent through the portal within 10-15 minutes. She's amazing. 

I had an appointment scheduled with her for this Friday (along with my regular infusion) and I ordered a gift for the baby, which I was looking forward to giving her. Just got a call last week rescheduling my appointment so Lindsay can go out on her leave a little earlier--I'll be seeing a brand new NP (well, new to me) instead. I'm really feeling a bit bummed. This is purely from a selfish standpoint--I'm happy for her that she can go out a bit early and enjoy some personal time before the new baby sucks up all her time and energy. But I've been seeing Lindsay since my second infusion back in early October and I've gotten pretty spoiled by the attention. Hopefully the new NP will be good, too--she'll have a tough act to follow!

[TJM]

I had a tremendous NP for over 5 years and when she transferred it was a real bummer. She and I connected really well and she was both knowledgeable and caring and hardworking. Wish I could net another one like her! Good luck girl.

Peace

Tom

PS...I'm starting to think I'm tough on doctors. 😎

[Judy M2]

My NP also went our for a 6-month maternity leave. She was great. I didn't have the same connection with her replacement, but I've been having more video calls with my oncologist instead of the NP. 

[Tom Galli]

I'm sure not tough on doctors. I've retired 3 our of 4 on my cancer treatment team....

Stay the course.

Tom

[LexieCat]

1 minute ago, Tom Galli said:

I've retired 3 our of 4 on my cancer treatment team....

So you drove them not only out of their job and profession, but out of the workforce altogether. Nice goin', Galli.

[TJM]

Wish Tom G could be my onc...

[LouT]

Lexie,

The older I get, the more I get like cats I've owned.  I don't like change and accept it with all the grace of an angry badger.  I hope your next NP is all you need them to be.  Good luck my friend.

Lou

[LexieCat]

First visit with the new NP (Lauren) went well. Lindsay has already had her baby, and the woman who checked me in took my gift back to Lindsay's office so someone could get it to her.

I warned Lauren that she'd have a tough act to follow. She laughed and said she knew that--she'd been shadowing Lindsay for the past month or so and knew that her patients loved her. Lauren told me to be sure and tell her if she was slipping up.  We talked about kids/family (she has four kids under 6!), as well as the cancer/treatment stuff. I felt like we connected well. So we seem to be off to a good start.

My labs all looked fine--the few readings that were out of range were things that HAVE been low/high and not of concern. So far, the only thing hitting me right now are problems going back to sleep when I wake in the night--I've noticed that, the last couple of infusions, and I attribute it to the dexamethasone. It should be better in the next couple of days. Even though I'm retaining a bit of fluid (2 pounds since yesterday), I don't feel too puffy. 

My next visit will be with oncologist and include scans. 

 

[Jesse L.]

I can't say for sure what my NP at the infusion center will be like...I haven't met him yet. Although I am assured that he is top notch by the nurse facilitator in the oncology ward of the Green Bay VA clinic where I'll be getting my infusion. I've had several meetings with her so far to include an hour and a half tutorial with my significant other, myself, and her going over every last detail of chemotherapy, what to expect, a tour of the infusion center, etc. That occurred just yesterday...I can't complain even in the slightest...I guess unless you count being in this position at all. From what I was told they'll be monitoring everything about me; I have to go in for blood counts 7 days after  at least the first and possibly all the infusions for a blood draw for that purpose and if anything at all is out of whack, adjustments to the schedule will be made. 

Oh, to be back in the carefree days of just wondering what was the best way to make sure I had my boat ready for my back to back to back spring fishing trips... Sigh...! 😕😕😕 

[LexieCat]

This NP fills in for the oncologist for my medical visits when I have my infusion for those visits where there's no scan (I see the oncologist himself when I have scans). The infusion nurse varies--they are not NP's but rather regular RNs. But every one of them i've dealt with has been awesome. 

Glad to hear you're liking the people you're working with so far, Jesse. They become a very important part of your life. 

I forget, are you getting (or have you gotten) a port? I know that every time I go in for my blood work, infusions, or scans with contrast, I'm SOOO happy to have a port.

[Jesse L.]

Why yes as of 3/24 I in fact do have a port... The oncologist questioned as to whether I'd get a port as I will only have 4 infusions but the oncology nurse just looked at the oncologist and stated matter of factly, "He is getting a port." and that ended the discussion. When they put the port in I was told by the "educator" after the port procedure that most people keep them in for at least two years and some even longer... I wonder if that is truly the experience of folks out there. Let me know you all?

And yes I am actually glad I now have one as they will be using it for everything in the future. I was told that all the many, many, many scans I get from now on will be using contrast and they will even use the port for that as well. My viens are breathing a sigh of relief. Some of those healthcare people really are very bad at doing a stick...sheesh!

On an up note I did get my second covid shot today...at least that won't kill me.😒😒😛

And I just can't get my head wrapped around the side affects of chemotherapy (starts 4/5) yet. I'm really trying to prepare for every contingency, but there are just so many things to take into account. The book states that people can work while they they are getting chemotherapy...I can't even imagine it. That's gotta be a typo and are they kidding???!!! Everyone out there let me know too about that as well. Not that I plan on working...I'm almost exactly the same age as you LexieCat and I'm with you...done with working for a living forever!

Thanks all for your help and I wish well for each and every person out there. 

 

 

[LexieCat]

As far as chemo/immunotherapy effects go, it's good to be educated on what you MIGHT experience, but based on what I've read on these forums for the past few years, every person's experience is different. The most common effect seems to be fatigue. For most people it's not completely debilitating--at least not all the time. You learn to work around it (not necessarily in the employment sense, but just everyday life). And for most of the other unpleasant effects, those can be medicated/treated or your body adjusts. 

Every so often someone simply cannot tolerate the drugs, in which case the person is usually switched to a different protocol. 

And I'm glad you got the port--you will love it. FYI, when they access it, they swab your skin with an antiseptic that also slightly numbs the skin. I usually feel a small pinch when it's accessed. Nothing like the painful battle to get my elusive veins. 

As for how long I'll have my port, I'm on maintenance therapy, which will go on indefinitely. I'm pretty sure my port will stay with me for the foreseeable future. I believe if you aren't actively using it, they recommend that you go in for access/flush every few weeks.

ETA: I've had at least one "happy" and unexpected side effect from chemo. I had a large dark spot on my right cheek--a rough, ugly patch that has grown over the past 20+ years. It's been checked by a dermatologist and it's not dangerous, just an ugly skin condition. No matter what I did, it showed through makeup.

After several infusions, I noticed it has been smoothing out and lightening to the point where it can barely be seen if I'm wearing makeup, and very light and hardly noticeable if I'm not. For now, at least, it saves me the expense of having it lasered, lol.

[Jesse L.]

I was told when I got the port that it would have to be flushed every six to eight weeks so as it would continue to be viable... Given the alternative not too much of a pain all things being considered. 

As for chemotherapy side effects, the only thing I'll consider really bad would be nausea (and the resulting vomiting if it gets that far). For some odd reason I personally have always really hated that and will do anything to stop that from happening. 

Other than that I think I'll be fine once I get used to it (an odd way to put that for sure). Thank God it's only for three months and I do so hope never again. But if it is in the cards for me to have it happen again I will do what I need to stop it. The alternative is not so good... 😔

[Judy M2]

Jesse, nausea is the worst for me too, and that's why I can't tolerate the usual opoids like oxycodone. When I had painful esophagitis, I was able to get a palliative care doctor who prescribed methadone, and it worked very well. After I went on Tagrisso, I had to switch to a Fentanyl patch because methadone doesn't play well with Tagrisso. That worked pretty well. 

During my recovery from abdominal surgery last year, I had frequent bouts of vomiting when I tried to do short walks outside (with a walker as part of my rehab) or if I sat in the sun (as recommended) for a few minutes too long. Then when I contracted shingles in June, I discovered I could no longer tolerate Ibuprofen, and the anti-viral medication also made me sick. In all those instances, Zofran mostly worked but sometimes it didn't. Compazine doesn't work at all for me. 

It was a miserable time, but I finally recovered from all of it. Just know that however you react to your treatment, you will heal. I've resumed everything I did before treatments. I hope you will too. 

P. S. I still have my port but it hasn't been used or flushed in a year. I'll have to ask my oncologist about "maintenance"..

[LexieCat]

My suggestion is to wait until you start to feel a bit queasy before taking the anti-nausea drugs, to avoid severe constipation (more miserable than nausea, IMO). I took a Compazine last night because I felt a bit queasy but I generally don't need more than a couple of doses per cycle, at the most. Sometimes I don't need any. They gave me two different drugs for nausea--Zofran and Compazine. My NP told me the Compazine is less prone to causing constipation, so I try to stick with that (they give me Zofran at the time of infusion). If you find yourself needing the anti-nausea drugs more often, I'd suggest taking a daily dose of Miralax (maybe check with your doc or NP to make sure that's OK).

I found this website, which seems to be reliable and a good source of info about cancer therapy drugs (including combos) and what to expect in the way of side effects and help managing them: https://www.chemoexperts.com. As best I can tell, after checking it out online, it appears to be a reliable source of info (your own medical team is always best, but this is convenient).

[Sandy N]

15 hours ago, Jesse L. said:

As for chemotherapy side effects, the only thing I'll consider really bad would be nausea (and the resulting vomiting if it gets that far). For some odd reason I personally have always really hated that and will do anything to stop that from happening. 

LexieCat's advice on holding off on the anti-nausea pill unless you really need it is the way to go.  They do say to NOT wait until you are vomiting before taking it, though.  I just finished up 4x triple chemo treatments, one side effect of that was constipation.  It is definitely true that constipation can make a person feel just sick.  I felt nauseous from that, not the treatment - LOL!  What a relief it was when that finally broke.  I did use Milk of Magnesia periodically to try to get things moving - .  

 

[Jesse L.]

I'll do as LexieCat suggests with at least the caveat of a daily Mira lax treatment to stave off constipation. Lately I've been taking stool softeners daily as I seem to be prone to constipation even without chemotherapy and thats working great for me. We'll see how much I need to adjust once chemotherapy starts. 

Oh, I have these vivid memories of suppositories in the hospital when I came out of lobectomy surgery and they were feeding me 20mg. Oxycodon daily. After four days of zero movement, I swear that was a premier miserable bathroom trip indeed. I would have to be near death to take that stuff again...let me tell you...!! In a wry sense one of the few incredible small chuckles I get out of this whole ordeal. This may be doable but it's still hard...