Breathlessness?

MaryVig

I am slated to have the start of round 3 tomorrow (dose dense carbo/taxol)... and I feel like crap. I have no energy and if I climb the stairs from the basement, I am out of breath. I have no temperature and no swelling anywhere.  From another forum, sounds like my blood counts really dropped (they were low last week, but above the cut off, so the final taxol in round 2 was given).  I am hoping that the infusion center posts my counts tonight (they use MyChart) so that I can see.... but could they have me get a platelet infusion? blood infusion in general? How is that done (ie, is it done through the Port)?  so many questions and I am so tired.......

Thannks for any suggestions.

LorettaMarshall

Mary~Perhaps a regimen change could lessen the "crappy feelings"

Dear Mary: 

We’ve both been on the same chemo regimen, Carbo/Paclitaxel (Taxol).  You, however, are getting a weekly dose, whereas mine is given at 3-week intervals.  After you read the results of this study cited below, you might want to “intervene” on your own behalf, and tell the  oncologist that you would rather have the “3-week” cycle, rather than dose-dense chemo. 

My treatment sessions of Carbo/Taxol wear me out, and I can get so tired it’s an effort to get up out of the chair.  Now that I’m finished, (Jan, 19^th) I feel a lot stronger today ten weeks out.  My hair is about 1/8^th of an inch long, and my eyebrows have come back in, and some hairs I didn’t want on my “chinny chin chin!”  However, if the pattern goes as before, I only seem to have a “progression free survival” of 10 months or so before the CA-125 counts rise, and the symptoms worsen. 

But with each successive regimen, I find that I am weaker and weaker.  And in the 5^th treatment of this last session, I felt more tired and drained of energy, than ever before.  I was too weak to go upstairs.   I only have one room up there and it isn’t really necessary that I go up there at all.  But you know you just hate to give up doing all the things you were once able to do. 

And so I’ve found that this third series of 6-treatments, each one 3 weeks apart, was very “taxing.”  And I can tell with this 3^rd series, that it has taken a greater toll on me than the previous ones.  It is gradually wearing me down, so much so that this time around, I questioned the wisdom of saying “yes” to another treatment, when next the CA-125 counts rise and the PET/CT shows further progression.  But there I go, crossing the bridge before I get there, and Lord knows we have enough to contend with one day at a time.  And so I quickly dispel myself of the notion that I need to make a decision today about something that is in the future! I want to enjoy the things I have today.  I’m thankful for the things I have left, more than I’m upset about the things I can no longer do.  We can be blessed even while we must settle for less. 

You might cite the study below and discuss it with your oncologist.  After all, you’re the one whose legs probably feel like lead, and you have to rock back and forth to get yourself up out of the chair.  At least those were some of my side effects this last time around. 

Mary, take a look at the results of a clinical trial cited below.  There were 2 groups of patients involved.  Some in the group took weekly Paclitaxel while others took it every 3 weeks. Some took a drug, AVASTIN, in addition while others did not.  

 Mary, according to this report it appears that you would not be nearly as weak or anemic on a 3-week regimen.  This is part of the info from the report of February 2016.  I read the long article as well as the abstract. 

So here are some of the findings cited in the abstract as well as in the “full article” which you can access at the link below my name.  Conclusions of this clinical trial are very interesting. 

This study is a comparison of the Carbo/Taxol combo, with or without AVASTIN, of those who had the weekly vs. the every-3  week patients.  The primary study end point was progression-free survival.  It was hoped that the addition of bevacizumab (trade name AVASTIN) would prolong survival with a better quality of life, but it did not prove to be so. 

• http://www.nejm.org/doi/full/10.1056/NEJMoa1505067#t=abstract

“Conclusions - Overall, weekly paclitaxel, as compared with paclitaxel administered every 3 weeks, did not prolong progression-free survival among patients with ovarian cancer. (Funded by the National Cancer Institute and Genentech; GOG-0262 ClinicalTrials.gov number, NCT01167712.)…”

 Furthermore Mary,  in the full article I find this statement…”… Weekly paclitaxel was associated with a higher rate of sensory neuropathy of grade 2 or higher, as well as higher patient-reported neurotoxicity scores, than was paclitaxel administered every 3 weeks…

 Quality of Life

A total of 560 patients (277 patients receiving weekly paclitaxel and 283 receiving paclitaxel every 3 weeks) could be evaluated for patient-reported outcomes. After adjustment for baseline scores, age, disease stage, and option to receive bevacizumab, patients who received weekly paclitaxel reported lower scores on the FACT-O TOI (reflecting lower quality of life) during the assessment period than did those who received paclitaxel every 3 weeks…

 Efficacy

After a median follow-up of 28 months, 67% of the patients were alive. In the overall intention-to-treat analysis, weekly paclitaxel did not appreciably prolong progression-free survival, as compared with paclitaxel administered every 3 weeks (14.7 months and 14.0 months, respectively…

 Although the incidence of patient-reported neuropathy was similar in the two treatment groups, the patient-reported severity of the neuropathy was greater among those receiving weekly paclitaxel than among those receiving paclitaxel every 3 weeks, and that finding persisted throughout the study period…

 Anemia of grade 3 or higher was reported in 36% (124 of 340 patients) of the patients who received weekly paclitaxel, as compared with 16% of those (54 of 343) treated with paclitaxel every 3 weeks (P<0.001)…

 Patients who received weekly paclitaxel were more likely than those who received paclitaxel every 3 weeks to receive a cytokine (30% vs. 22%, P=0.02) or red-cell transfusion (55% vs. 23%, P<0.001).

Although there was no significant between-group difference in the incidence of sensory neuropathy of grade 3 or higher, more patients in the group that received weekly paclitaxel than in the group that received paclitaxel every 3 weeks had sensory neuropathy of grade 2 or higher (26% [88 of 340 patients] vs. 18% [61 of 343], P=0.01)…”

So Mary, just between you and me,  if I am interpreting the findings of this trial correctly, and I think I am, this could explain why you are feeling like the “walking dead.”  My soul, it has been bad enough for me with the 3-week regimen of Carbo/Taxol.  I could never have tolerated the “dose-dense” treatment that you’re having.

Given how you feel, if I were you, I would insist that the doctor change the regimen to a 3-week regimen.  In the end, it looks like the weekly treatment referenced in this article could extend one’s life no more than 4 months.  I would rather have a better quality of life—such as it is—with the 3-week regimen, than to suffer more ill effects just to live a few months longer.  Understand that the term “progression free survival” (PFS) means the length of time that the cancer remains in a stable range”.  That is different from the “length of time a patient lives once they have been diagnosed with cancer”.  After all, it’s supposed to be about “quality of life” while we’re here—not just to see how long we can “tough it out” with little quality of life. 

Mary, by now you’re no doubt learning that you have to be your own best advocate.  You only have one life to live.   You have a right to voice your preferences.  The doctor only knows what you tell him.  Even though he/she may think they are giving you the best protocol, you’re the one suffering the side effects.  While the chemo combo of Carboplatin and Paclitaxel )Taxol are one of the “standard” treatments for Ovarian cancer, the dosage should be adjusted to what the patient can endure! 

From the conclusions drawn from the article cited, it would appear that most likely you would feel much better having the treatments at a 3-week interval rather than weekly.  We all respond differently, and I’m sorry you “feel like crap”—I totally understand.

Love Loretta

P.S.  The full article link that goes into even greater detail is listed below.  (Published February 25, 2016 in the New England Journal of Medicine.)  I only highlighted some portions that brought out the fact that those who took weekly Paclitaxel did NOT fare better than those who had a treatment every three weeks.

 

http://www.nejm.org/doi/full/10.1056/NEJMoa1505067#t=article

 ORIGINAL ARTICLE

“WEEKLY VS. EVERY-3-WEEK PACLITAXEL AND CARBOPLATIN FOR OVARIAN CANCER

John K. Chan, M.D., Mark F. Brady, Ph.D., Richard T. Penson, M.D., Helen Huang, M.S., Michael J. Birrer, M.D., Ph.D., Joan L. Walker, M.D., Paul A. DiSilvestro, M.D., Stephen C. Rubin, M.D., Lainie P. Martin, M.D., Susan A. Davidson, M.D., Warner K. Huh, M.D., David M. O’Malley, M.D., Matthew P. Boente, M.D., Helen Michael, M.D., and Bradley J. Monk, M.D.

N Engl J Med 2016; 374:738-748February 25, 2016DOI: 10.1056/NEJMoa1505067

Abstract

Article

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Citing Articles (26)

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MaryVig

Great information

Wow. Thanks for this Loretta. I'm meeting with the oncologist tomorrow and will discuss this option. I can't imagine my numbers will be high enuf to begin Round 3 so I suspect they will gave to do something. Thanks so much.

bettyboop3917

Been there

I went through 6 rounds and found myself more whipped after each one. By the time I reached round 6 I would pant like a dog just doing a short walk. My last chemo was in April of 2016 by Sept I was not panting as bad. I thought for sure I would end up getting a transfustion while under treatment but insted they just waited a few days more to do the last treatment for my numbers to come up to the safe to give the treatment levle. I wish you luck in your fight. 

MaryVig

Yup had 2 bag transfusion

a long day today. Met with the oncologists PA, and she decided that I would not start Round 3 yet, but because my red blood count was so low, I would need a transfusion. I will have another blood test in 5 days, they would wait to decide how to change my chemo. 

It was very strange to have someone else's blood going into me. It took nearly 4 hours between the prep, and checking me every 15 minutes.  I don't feel much better yet (90 minutes after), but figure by tomorrow should feel better..