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How many did less chemo than scheduled? (Recap of Lost Posts, Topic Created by Ribbons on Jan 09, 2019)

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cmb
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This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.

Ribbons

Jan 09, 2019 - 2:50 pm

Just finished round 4 of 6 scheduled Carbo/taxol, I was stage 1A but clear cell. I am considering doing only one more round of chemo, for a total of 5. Just wondered about opinions on this. I am also supposed to have 3 brachytherapy treatments, which I am pretty sure I will do those. I have not had nausea, almost but not quite, but I am just so weak all the time, and I have absolutely no balance now, sometimes I can't hardly walk a straight line! My blood counts are all good, I get Neulasta because of low neutrophils. My CA-125 has gone from 179 at surgery on Oct 2nd, to 23 last week. I'm just feeling like maybe I can make it through one more round but don't know about 2 more. Would I be foolish to wimp out on # 6 ??

 

Tamlen

Jan 09, 2019 - 3:58 pm

Totally get your thinking

I totally get your thinking about this, Ribbons. I was generally ok during the first 3 rounds, but things started to get rougher at Round 4. I said to my husband, "It's hard to imagine the cumulative effects here through two more rounds, based on how rotten I feel now." I also lost my sense of balance, some hearing, started to get weird ripples in my eyesight and my sight went from better than 20/20 to worse. I was pretty exhausted all the time and in my case, my hemoglobin started to tank so badly that I couldn't breathe very well even just walking across the room.

Rounds 5 and 6 were pretty rotten for me. But I'm Stage 4B, so I'm in a very different position than you. I was glad I'd done them when I learned that the lung mets really had taken a beating from the chemo, but you're not grappling with that.

Can you have a frank conversation with your onc about the damage to your quality of life and the tradeoff for a Stage 1 clear cell patient? It seems reasonable for you to raise quality-of-life questions and the benefits/downsides of continuing.

 

janaes

Jan 09, 2019 - 4:18 pm

Hello there are some that did

Hello there are some that did less than six. Im sure they will chime in. I know for me i really had to push my self to finish all 6. My mumbers stayed good too.  I started have back pain towards the end of chemo and it was hard. What got me to go to my last treatment was knowing that it was my last one. I remember thinking before i got there that day was that i sure hope my numbers are still good because i want to do this last chemo today and i do not want to wait. I was anxious to get it over with. It took me a while to recover from the back back. I ended up getting an MRI and ended up being diagnosed with ostioprosis. I had a bad back before chemo but felt it definetly got worse from the chemo. Thats my opinion. My doctors might not agree but feel like it did.

Now 2 years out my back is a lot better. I take vitinin d and calcium still. I took a break from the vitimins for a while and feel better when i take the vitimins.

I had MMMt unterine cancer stage 2 grade three so that probable gave me more motivation to do all six. MMMt is an agressive uterine cancer so that played a role in it too.

 Physically i really am doing well enough to do all the things i did before. Yea i have to take medicine but i feel good that i did all i could

It will be your choice. I remember others telling me when i was making desisions about radiation that i get to live with my self and the desitions i make. I did bracytherapy but decided against external radiation because i had cancer 20 years earlier and had alot of radiation at that time. I didnt feel it was right to do more.

I hope the others chime in for you so you can hear some that didnt finish.

Good luck as you go forward.

 

Armywife

09, 2019 - 5:08 pm

I had 5 1/2

You rock!  You've done well so far.  I had one round of carbo/taxol and had a horrible reaction to it - ended up in the hospital with aFib and RVR, and the most horrible neuropathy you could imagine - couldn't walk, couldn't feel my arms and legs.  It resolved before the second chemo, but my doctor removed the taxol and just gave me carboplatin for the second treatment.  Numbers 3-6 were carboplatin/taxotere, and I had no recurrence of neuropathy at all.  It wasn't pleasant, but it was do-able.  I'm glad I had all 6 treatments, although I really thought about stopping after that first one!

 

zsazsa1

Jan 09, 2019 - 6:57 pm

I will try to push through all 6 rounds if I can

I absolutely hate going to get "poisoned", but I will keep going through the 6 rounds if at all possible, even though I'm having low platelets with it.  It's so difficult with this serous/clear cell cancer - we don't really know if it's helping us, can't tell if we're responding to chemo unless we over-irradiate ourselves with CT scans, and as we all know, that increases one's risk of secondary malignancy.  Interesting to hear others talk about vision changes.  I've been thinking that my vision is getting worse with the chemo, but thought I was just imagining it.  For me, the nausea is pretty bad, but I can live with it.  I read somewhere that people who had bad pregnancy nausea also have a lot of trouble with chemo nausea, and that has been the case with me.  

It's just such a cr-p shoot.  That large retrospective study that I posted recently did seem to show that chemo helped to reduce the risk of recurrence, so it seems to me that if it is at all possible to do so, one should try to push through to finish all 6 rounds, if at all possible.  I would hate to be in the position of having a recurrence and thinking, if only I had finished the chemo..., even though we really have no way of knowing.

 

EZLiving66

Jan 10, 2019 - 10:10 pm

Only made it through three

I was so sick after three chemos I could not walk without help. I had to use a wheelchair to get the lab at the hospital for my blood tests and a walker at home. I went to see my GP on December 27th (my 4th chemo was scheduled for the 28th). She ran all kinds of tests. I had the port removed on December 22nd because it was so infected and would not heal. My liver and kidneys were starting to fail. My blood glucose was spiking at over 600, my finger and toenails had fallen off and I'd had some bleeding in my brain because my BP was so high. I was dying. My oncologist was not happy I stopped at three because I had UPSC, Stage II but my GP said it's his job to cure the cancer; but it's my job to keep YOU alive. I truly believe a 4th chemo would have killed me. No radiation was recommended.

Love,

Eldri

 

Soup52

Jan 10, 2019 - 1:02 pm

I did all 6 with clearcell 3C

I did all 6 with clearcell 3C . I don’t regret it but it did seem to take me longer to recover from that one.

 

BluebirdOne

Jan 10, 2019 - 9:11 pm

I did four out of six.

They first recommended three treatments (USPC stage 1a with LVSI) then upped it to four. My team in the middle of treament then suggested 6 but I had bad neuropathy in my hands (which has since subsided) but still have shooting pains in my feet, loss of balance, and a bit of vision loss. After one treatment they cut back the dosage by 20%.  My RBC continued to dive and not recover much after each chemo so I was very out of breath and still am more than 2 months post last chemo. I did have 3 brachytherapy in a sandwich between treatment 3 and 4. Was NED after my first CT scan in November. February is my next visit, but I am really worried about the May six month visit as I had a lung nodule that they think is nothing but will see if there are changes in the next scan.  My team thought that four was enough, so I was happy to oblige, but know if there is a recurrence there will be more of everything in my future. No one size fits all and only time will tell. 

Denise 

 

barnyardgal

Jan 11, 2019 - 8:08 am

I had adriamyacin (old doxil)

I had adriamyacin (old doxil) and carboplatin. Eight treatments were scheduled, but I ended up getting 7. Because the adriamyacin hit my blood counts so hard, there were a lot of delays, and finally after #6, we took a break and did radiation, then came back and did one more chemo. 

The doctor said the 7 were fine, though she said I could do #8 if I wanted. I didn't want:)

 

Ribbons

Jan 11, 2019 - 10:45 am

Thank you

Thanks for the replies, it’s helpful to hear what others have done. I’m doing ok after this fourth one so I am going ahead with #5, and I will probably do 6. 

 

hopeful56

Jan 12, 2019 - 2:44 pm

AfAbout a

I had 3 out of 4 treatments of carbo/taxol.  I'm staged 1a grade 3 uspc.  After 3rd treatment really hit me, neuropathy with shooting pains in extremeties, weak, very tired and nausea starting. What I didn't realize until about 6 months after I stopped chemo, how much it affected my taste and also cognitive functioning. Chemo brain does exist.

About a week before round 4 I called and told them I didn't want to go ahead with the last treatment.  I also work full time and live alone.   Where I am staged and with my treatment plan, I made that decision without any rebuttal from chemo team.  Just went for my 5th quarterly check up, so far so good.

Wish you the best.

Sandra

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