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Advice - MO Visits spaced out?

Pam M's picture
Pam M
Posts: 2193
Joined: Nov 2009

Hi - pretty new patient here, started round 1 induction chemo (21 day rounds) for Base of Tongue IV on Nov 19 - round two on Dec. 9.

Round 1 I met with MO every week and had blood work done. GI tract got fried (meds helped w/ pain) and developed an infection while white cells were tanked (antibiotics worked). Started round 2 a week ago (Dec 9), and was told my next appt would be Dec 30 for next round of chemo.

Does this sound normal? I feel like my blood work was a sort of security blanket, and instant feedback on how my white cells and kidneys are doing. Is this normal to not check as often on round 2 if someone makes it through round 1 OK?

- Pam

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I am not sure what an "MO" is, Pam, but I assume and hope that it is a doctor that you trust. First and foremost, Pam: trust your doctors or get new doctors.

The rest of what you describe nearly brought tears to my eyes for a number of reasons.

I recognize the naivite, the innocence, and feel for you, I really do.

It all sounds normal to me, Pam, given that we have different experiences, of course, each and every one of us.

I had to skip a number of chemo rounds, in fact, because of low WBC counts and/or platelet issues. Waif that I am, I considered these excellent times for truancy, if you will.

Thus, I enjoyed them, these time outs.

As for lesser checks in subsequent rounds, I don't get it. THe proper answer, I think, is "No." But, given time, yes, the analysis begins to wane and you must be your own best advocate. That is not to say that these people are your enemy. Hopefully, if you trusted them with your life once, you continue to do so.

Even so, be your own advocate. Ask questions. Get answers.

Take care,

Joe

Pam M's picture
Pam M
Posts: 2193
Joined: Nov 2009

Thx, Joe for responding.

My MO (Medical Oncologist, ChemoMan)was described to me by a former (after successful tonsil cancer treatment) patient as "a strange guy, but great doctor". Even the techs at a nearby hospital (where I got my PICC line in) said he was good, but more about the science than the people. I'm good with that. I don't really care if my dr is people-pleasing - as long as he knows what he's doing, and I think he does. Actually, I don't think he's so strange - he has a no-nonsense approach I'm good with (even when he pooh poohs my nutrition questions). The Radiation Oncologist I'll go back to after induction chemo (also good reviews) is much more of a people person, as are almost every nurse and tech I've encountered - maybe that's why the other patient thought the MO odd.

My aunt and son are more like "He's the dr, he knows what he's doing, they do this all the time. Just do what they say." So part of me feels petty and childish, wanting regular reassurance that I'm doing OK when, apparently it's commonplace there to only do that for the first round.

Argh! My Aunt was just leaving for the day, and asked "Are you going in to the office today, or are you going to chat with your cancer people all day?" - Sorry - needed to vent. Don't "chat with cancer people all day", but do spend a good chunk of time in evenings especially reading discussion boards (and some time chatting).

I will give his nurse a call, though, and ask if this is how it's always done, and at least let her know how I'm feeling.

Thanks again for the feedback

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

My OncoMan sounds similar to your MO, Pam, outwardly seemingly cold and aloof. It takes all of my power to get him to occassionally crack a smile and when he does I am afraid his face is going to crumble :).

But, as you suggest, it really seems not to be a stereotype that the best of these specialists have the same sorts of personalities. I have considered this myself and consider there are two prominent reasons for this: 1) they were probably paying attention in class while the 'patient-friendly' types were being friendly :); and 2) more to the point, these folks see so much failure on a regular basis by the nature of their jobs, that they would be nuts to become emotionally invested in their patients.

Still, I CAN make both OncoMan and EntMan laugh on occasion :).

As for the notion by Aunt and others that hanging out in CSN is perhaps a waste of time, I am fortunate in that regard, but can understand how others cannot know that this joint is both a font of knowledge AND a cheap source of therapy :).

Finally, again visiting the concerns re visits, it is not only typical, I think, but even great news for the visits to begin to stretch out. It means that they are no longer so concerned about a revisitation of the disease or at least that they are confident enough about the effects of prior treatment that they are now prolonging your time between such treatments. (Did I just set a record for usage of the word 'visit' and/or permutations of it within a single sentence?)

As an example, Pam, following my treatments first for head/neck cancer and then lung cancer, I saw OncoMan every three months following a CT scan for the first year. After that first year, the visits (and scans) were stretched out to six months. I am now at a stage, after almost two years of being NED (No Evidence of Disease) that we will be moving to yearly, I expect.

And, Pam, if you can't vent here, I ask, where can you vent?

Take care,

Joe

Pam M's picture
Pam M
Posts: 2193
Joined: Nov 2009

Spoke with my dr's nurse today (very much a people person - lots of patience, answered my questions and let me know they're pleased with the way I'm coming along - tolerating treatments very well). Cutting out weekly visits for the second 21 days of treatment is par for the course for people who make it through the first 21 days all right. It' just that my idea of all right is nearly glitch-free, and their idea of all right is despite glitches. Felt better after call (but still would have liked the reassurance of add'l bloodwork).

Appreciate the insight.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

What you do, Pam, is that you take a finger from either hand and lift them up to your lips, the outer edges, and you then move them up, dragging the lips, the mouth, with them.

This is called a smile :).

We will work on laughing later.

In the meantime, other than the 'glitches' that they are not explaining to your satisfaction, it seems, I would advise that all is well (the 'glitches' would bother me too).

If my memory is not completely shot, you are next going to have treatment AFTER Christmas. Take advantage of that. Celebrate, if not the event normally associated with the day, the opportunity to be with those you love and who love you.

Eventually, with respect to the bloodwork Pam, you will start to call them vampires, trust me on that one.

Take care,

Joe

Kent Cass's picture
Kent Cass
Posts: 1770
Joined: Nov 2009

Joe's chemo experience was similar to mine- in that mine was interrupted by a 2-week "vacation" when I was too sick to get rad. The rad ladies, I might note, WERE NOT surprised when I called-in to cancel for the first-week days, and I started the second week in the hospital, so that aced that one. If it happens to you- par for the course.

As for the bloodwork- sounds typical to me. I kept running low on Magnesium, even taking a multi-vitamin every morning, but am beyond that, now.

You're gonna be okay.

kcass

Pam M's picture
Pam M
Posts: 2193
Joined: Nov 2009

Kent,

Thanks for sharing. What sickness interrupted your tx? Was it chemo-rads related? You developed it during/after week 1? Am I right that you canceled your own treatment appointments because of the sickness, then had to be hospitalized a week later? Glad it didn't endanger your treatment. And glad the rad techs let you know that it wasn't something that surprised them. Did anyone mention the possibility to you before you started?

I met a woman day one chemo (I call it the Chemo Lounge) who had been hospitalized. She was at the lounge for fluids only (she was given two weeks of fluids only after getting out of hospital). I felt so bad, because she said she hated treatments, and hated the fact that hers were going to be extended now.

Thanks for the punch in the shoulder. Hope things keep going good for you (I've read several of your posts - you must know you're helping not only the person you're addressing, but lots of onlookers, too).

- Pam

Kent Cass's picture
Kent Cass
Posts: 1770
Joined: Nov 2009

The sick that got me in the hospital was due to my fever spiking over 101, along with the mouth trainwreck. Don't think you have anything to worry about, on a comparative basis, Pam. I hope not.

My treatment seems to have been different from anyone else's (that I can find), though I know there has to be others. I got chemo via two pumps going 24/7 for four days in weeks #1 and #4, while getting rad 5 days/week in weeks #1-#4. Cisplatin and Flourouracil were in the two pumps I carried, emptying into my Port. I managed okay, for some unknown reason, during weeks 1 and 4, with the pumps- however, the worst of times were right after they unhooked the pumps, which were my times in weeks #2 and #5 and 6. I was able to do the rads in #2, but there was no way I could do it in week #5- because of the physical condition of my mouth. Then, I started with a fever during the weekend between #5 and 6; and, by the Monday AM of #6, I was constantly running over 101. Onco's office said I had to get to a hospital- now. ER Dr. said I had INFECTION going-on, and it was a battle I had no hope of winning, other than with a stay in the hospital. By then, I welcomed it. And it amazed me how well the antibiotic drips they had me on did the trick. Turned the corner 1 1/2 days into the four-day stay, and was ready to go home when day #3 began, but the Onco talked me into another night's stay.

Weeks 2 and 3, and 5 and 6, were the times of Morphine and ice, Pam. I didn't like the stuff, but it had to happen, for me. In a number of my posts I advise to get the prescrips in order beforehand, because I did not have done at the end of week #1, and suffered a lot more than I had to. And though I didn't like the liquid Morphine (kinda scared me), it became necessary, and helped one heckuva lot. And, of course, MAGIC MOUTHWASH is essential.

TO ALL- we who are post-treatment are proof you can get thru this. And when things get so bad for you that such as Morphine is necessary- DO NOT LOSE HOPE. YOU WILL BE AMAZED BY HOW WELL THE BODY IS ABLE TO RECOVER- AND IN A RELATIVELY SHORT TIME.

You will get beyond this, Pam. We are all with you.

Believe.

Pam M's picture
Pam M
Posts: 2193
Joined: Nov 2009

Joe,

Would try the fingers to sides of mouth thing, dragging mouth up for smile, but, like round 1, I've got mucositis, and although I smiled when I read your post, it's more of a straight line with eye squinch thing for me for now (my mouth should stop hurting by Monday, and the pain's not bad now).

Your memory's great. I start round 3 Dec. 30. My Oncologist said t-giving and Christmas would suck this year. Felt bad T-giving (and felt like everyone was watching me), but if round 2 is like 1, not only will I feel better, I'll have family around for Christmas (nothing sucking about that), so that's a bright point for me. And if not - I'll trade a couple of bad holidays for lots of additional ones any day.

On the "glitches" - Don't get me wrong - the "glitches" I mentioned were side effects that hadn't been covered that I developed (GERD symptoms, PAIN traveling down GI tract, and what Onco called "fried mouth and GI tract"). Then, despite being careful, I got some sort of infection (quickly treated with antibiotics). The doctor's office didn't cover the surprise side effects, because most patients don't get them. BUT - out of the 21 day cycle, I only felt BAD for 3 and 1/2 days. I had no vomiting, and very few of the "standard warning" side effects - I feel pretty lucky on the "suffering during treatment" front so far, and hope it continues throughout.

Again, thanks - I get a lot from all your posts.
I'm assuming my chemo-rads will start in February, but don't know that. Also assuming going in every day as opposed to every 21 will get old fast - then I'll have a new complaint.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

You made me laugh. Twice. That's a good day for anyone, to make someone laugh.

You are not without humor, Pam :).

Take care,

Joe

Pam M's picture
Pam M
Posts: 2193
Joined: Nov 2009

It's good to make someone laugh - that's a just one part of how you help people - and it's greatly appreciated, Joe. Glad I could (at least partially) return the favor.

Be well,

- Pam

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