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Update and surprise

1 year 6 months ago - 1 year 6 months ago #56268 by dtat60
Thanks for the encouragement, Rockyiss! I hoping to get through this without too many issues. I dislike the Prednisone also but I have to admit it must work pretty good. I base this on the fact that for my first 2 treatments (I've now done 2/6) the next few days after I stop the steroids (day 6&7) are my worst days and then things begin to get better. I've noticed the CHOP affect my heart somewhat the day after, that concerns me a bit, although the Doc says that is not unusual and my heart seems to be in good shape and I've have now started having to urinate very often similar to right before I was first diagnosed with Bladder Cancer, however the [C]Cyclophosphamide -HOP is known to irritate your bladder and cause discomfort when you pass urine so I'm hoping that is the case.

I 'm just hoping that the long term affects of the Chemo do not haunt me and I can return to my normal activities. The BCG treatment and maintenance was not as dramatic for me as this but so far has been successful, hoping this will as well. Just keeping my fingers crossed that things will improve in a few more months and I'll look back with much glee!!

I've lost my hair now and my DW says I do have a good shaped head :woohoo:

Thanks again for your thoughtfulness!

Dave

08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG

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1 year 6 months ago #56260 by Rockyiss
Hi , I just wanted to let you know my husband was found to have large b cell non Hod. Lym in 2008. His Dr was very sure he would beat it with R-chop. After his second treatment his scans showed the cancer being knocked down . He lost ALL of his hair after the 2nd treatment. He hated taking the prednisone . Be sure to take your nausea meds even if you don't think you need them , if you think your doing ok you might get the surprise my husband got when he didn't take them, the nausea caught up with him. Once he started back on them he was fine. The chemo knocked him on his butt but it also cured him of the lymphoma. His last scan in 2014 showed no lymphoma.
I just wanted you to know b-cell is very beatable !
Ps I'm the one that has the bladder cancer , in fact I found out on Mon it is back. Time to get it out again.
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1 year 7 months ago #56061 by Jack R
WOW ! That is great news.
some part of your drug cocktail is amazing.
Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back...

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1 year 7 months ago #56059 by dtat60
I have to share the good news - after my first treatment on Tuesday, by end of day Wednesday my eye pressure is gone and I can breath out of my right nostril for the first time since last March, also smell is back. Simply amazing stuff - so far no major side effects from the Chemo.

I plan on making an appointment with my Urologist to discuss the plan going forward.

Dave

08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG

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1 year 7 months ago - 1 year 7 months ago #56052 by Alan
Dave,

Sorry about your situation. NOTHING says you must continue BCG. There have been many on these forums with different protocols and after 18 inductions you do have protection. In my own case it was once a week for 6 weeks, off 6, the 6 more and that was it. Many on these boards have also taken greatly reduced strength dosage of BCG besides different regimens. All I am saying is: everyone's body is different and there is no consensus on what is best in BCG except it is proven to be viable in juicing up the immune system. I am not saying to or not do, it just isn't a have to.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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1 year 7 months ago - 1 year 7 months ago #56051 by dtat60
Thanks for the reply - I will discuss with my Urologist, very interesting. From what I read the P is used primarily to prevent allergic reactions from the other drugs and to combat the nausea. Along with the R-CHOP I also have a lot of other drugs, mostly to combat the side effects of Chemo. I also had a port installed and it made things much better for installation. I was kind of disappointed that not everyone would use it (for IV contrast and blood draws) unless they have someone trained on staff.

It has been a flurry of tests over the last 3-4 weeks - Bone marrow biopsy, lumbar puncture, CT, MRI, PET, ECG. I will also have to have intrathecal (spine injection) Methotrexate. The Oncologist said that he would rather wait till after Chemo because after he withdraws the spinal fluid and then inserts the treatment he could hit a blood vessel and accidentally "seed" the lymphoma. This is being done prophylactically. Really? My philosophy is "if it's not broke don't fix it" but he says that if he doesn't do it and it latter appears in my central nervous system he would regret it. I sometimes feel that I am a victim of "standard protocol" which I guess is statistically proven?

Anyway - a new adventure! I'll lose my hair in the next few weeks (donating to "Locks of Love") and that will be a shock, not sure about my beard.

All the best to you and hope you have success in your treatments.

Dave

08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG

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