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Chemo/immunotherapy dosage


Babs

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Hi everybody,

So here I am getting my 3rd treatment of Carbo/taxol/keytruda.  I came in here with the resolve that I would have the Doc decrease my dose or give me something to get through the side effects.  Last time was HORRID with bone leg pain, 7-8 days of it.  We discussed it at great length.  She was willing to decrease the dosage by 20%, but couldn’t tell me with any certainty if it would affect the outcome and if so to what extent.  She was willing to give me steroids to see if that helped but since it doesn’t appear to be joint inflammation we’re not sure.  I swore I would not go through that bone pain again!  After much thought I decided do it again exactly like last time!!  I know in my heart it’s working!  I have gained almost 10 pounds since treatment started and my back pain where the mass is located is almost gone!  I just couldn’t take the chance that by decreasing the dose I was negatively affecting the outcome.  Time to put my big girl pants on and suck it up!  I did take the offered steroids.  Wish me luck!!
 

Babs

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Babs: That's a good decision despite  the side effects, pain and anxiety.  Why take a chance with reducing anything.  You only have one more round of Carboplatin so who knows that might ease your pain. Your pain disappearing is a good indication and hopefully the CT scan will prove that. Let's hope for a good outcome. I am rooting for you.

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Babs, if you've gained weight and your back pain is gone, then the chemo is working. And if your hair starts to fall out, and/or you get acne, that's confirmation too (the acne is temporary and eventually goes away). I hope the steroids help with your bone pain!

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Babs you are 1 step ahead of me.I'm glad you are going the course.If you know in your heart it is working that is fantastic.I get round 2 this Thursday. The bone pain was awful.It did finally stop after about a week but I still have problems in my feet-like really bad plantar fascitis.That is better today I am happy to say.

I actually woke up feeling pretty good overall today.

My doc gave me Oxycontin 10 mg. 1 in the morning and 1 in the evening.That made it so much better and I could sleep.

I will  keep you posted with how I fair. I hope you have minimal pain.

Hugs,

James

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James,

Glad you are feeling better.  It’s nice to have a little reprieve before the next go round.  I took my first steroid today, but also have the high dose in my system from the treatment yesterday.  Only slept for 4 hours last night.  If this goes like last time I will start feeling it tomorrow night.  
 

I will keep you posted as the week goes on. Good luck on Thursday.  I’ll be thinking of you.  (Misery loves company).  Hugs to you too!  🤗 

Babs

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I hope it continues to go well Babs. I am bummed out as now my legs are swelling ,mainly my feet. They had me come in yesterday and checked for blood clots with ultra sound.Another lovey day at the hospital.

Plus looks like Tom you were right about the triplet affecting my hearing.My balance is workable but there is a big change I'm much more wobblyand my hearing has been all over the place. Meeting with the doc on Wed and lets see what he does with the dose or drug. ''A lot of people don't get any side effects'' Who are these people I want to be one?

Sorry to hyjack your thread Babs.

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Thinking of you, Babs!!  Sorry I've been MIA, but have been in hospital with a stroke (thankfully mild).  Started out at our local hospital last Friday, which was a total disaster.  Checked out and went home on Saturday night then my oncologist at Duke rescued us on Monday.  ER at an HCA hospital was absolutely the worst experience of my life, but it affirmed my decision to be treated at Duke.  

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1 hour ago, Sabacat said:

Thinking of you, Babs!!  Sorry I've been MIA, but have been in hospital with a stroke (thankfully mild).  Started out at our local hospital last Friday, which was a total disaster.  Checked out and went home on Saturday night then my oncologist at Duke rescued us on Monday.  ER at an HCA hospital was absolutely the worst experience of my life, but it affirmed my decision to be treated at Duke. 

OMG!  That’s terrible!  So sorry you are going through this!  You said mild, how are you doing?  My husband had a “mild” stroke last fall right after my first chemo go round and he is still having some minor issues.  Just a heads up.  Please let me know how you are doing.

Babs

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I think this definitely qualifies as mild.  Affected only my right leg, and already is subsiding. I’m able to walk for exercise (although slower due to the deconditioning effect of a week spent lying around) and hope to be able to drive in a couple more days.  I’ve found that going up and down stairs does more for the driving foot control than anything else.  I have plenty of strength in it, just don’t trust myself to pick it up quickly enough if I had to brake suddenly.  
 

The good news/bad news is that there are some artifacts on the brain MRI that they think MAY be brain mets.  I don’t think so because I had a clean one shortly before we started chemo, but it’s not impossible. However, they have to wait a month before repeating the MRI to allow the stroke to clear out.  In the meantime, they did my CT to assess progress early and we have some good news there.  After only two rounds, we have NO thyroid or adrenal involvement,  reductions in number and size of lymph nodes and reduction in size of dominant RUL mass. There is a new nodule, but it is only 3mm.  And pericardial effusion is now characterized as small rather than large; pleural effusion is gone.

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Well I am glad you are OK.  Aside from the stroke, all sounds positive!  Just be careful downplaying the stroke.  They kept telling my husband how “minor” his was and he should be back to normal in 3 months.  This however made him think he didn’t need to do anything as far as rehab on his part and here we are almost 1 year later going through physical therapy and he is having some swallowing issues.  We changed his Doctor couple of months ago and feel better about everything.  Just be aware.  
 

As you can tell I am still plugging along.  Won’t know anything until my scan on October 20th.  Side effects are horrid, but hey they never promised me anything different.  Will have a video visit with the Mayo Clinic Doctor on October 23rd and then my Doctor here on October 26th and go from there.  I’ll keep you posted. Hang in there,

 

Babs

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18 hours ago, JamesB said:

I hope it continues to go well Babs. I am bummed out as now my legs are swelling ,mainly my feet. They had me come in yesterday and checked for blood clots with ultra sound.Another lovey day at the hospital.

Plus looks like Tom you were right about the triplet affecting my hearing.My balance is workable but there is a big change I'm much more wobblyand my hearing has been all over the place. Meeting with the doc on Wed and lets see what he does with the dose or drug. ''A lot of people don't get any side effects'' Who are these people I want to be one?

Sorry to hyjack your thread Babs.

James,

No worries about hijacking.  I know my Doctor is always concerned about swelling in my legs and ankles.  I’m not sure exactly what they’re concerned about.  Sounds like maybe looking for blood clots?  Have you heard what if anything they found?  Sounds like you are having more residual issues after the pain is gone.  I will be interested what they say at your 2nd treatment appointment.  I am assuming you’ll be seeing your Oncologist and they will be doing blood work?  Keep me posted.  Thinking of you,

Babs

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On 10/5/2020 at 11:01 AM, Babs said:

James,

No worries about hijacking.  I know my Doctor is always concerned about swelling in my legs and ankles.  I’m not sure exactly what they’re concerned about.  Sounds like maybe looking for blood clots?  Have you heard what if anything they found?  Sounds like you are having more residual issues after the pain is gone.  I will be interested what they say at your 2nd treatment appointment.  I am assuming you’ll be seeing your Oncologist and they will be doing blood work?  Keep me posted.  Thinking of you,

Babs

Hey Babs,

Had my treatment yesterday and saw the doc on Wed. He thought everything was looking good which was nice to hear. I see a different doctor from my team on each visit.Nice to get different points of view. My regular nurse was out but got someone equally as good. She was concerned about the tingling in my hands and feet and how that was affecting my balance.So she spoke with the doc and they are going to give me one of them by itself once a week as a preventive measure. I have 2 more rounds of regular infusions. I will  do the single dose ones later in the day which is a plus not to have to be there at 8 am. Can't remember which one it is. The one that causes the tingling?

Feel ok today-little weird but managed to work out and am now trying to psych myself up for a shower.

I got steroids yesterday and had a smaller dose today,but I also have pain pills to take for later if things start acting up which they probably will.

My hair is almost all out now I had nothing anyway,I'm pretty much a baldy and keep it pretty much shaved anyway. There goes that task!

I hope you are feeling good today!

James

 

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James,

I think by tomorrow the worst of this will be over.  I’m having some tingling in my fingers and yesterday started in my toes.  My Onc told me it can sometimes become permanent so they have to be careful.  So far mine is not going away.  
 

I hope you continue to be able to tolerate this. Keep me posted,

Babs

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I've had mild neuropathy in fingers and toes for years and years (15+)--I had a bunch of neuro tests done and nobody ever figured out the cause or a solution. It's very mild (slight numbness), and I'm sort of resigned to it. I don't really notice it anymore.

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