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Update and surprise
I thought I would update everyone with my present situation.
I’ve had good luck for the last 1.5 years with BCG treatments. I’m scheduled to have my #19-#21 in February……however, I had a nasty surprise in September. Around March it felt like I had a little pressure behind my right eye. I also have glaucoma so I went to my ophthalmologist to have my IOP checked. My pressure was fine as well as optic nerve. A few days later began to notice that my right nostril was a little stopped up. As it got worse I used Afrin and it cleared up. Your not supposed to use Afrin over three days or risk rebound congestion so I switched to Nasacort (steroid). That worked for a few days but then seemed to be less effective. So I started just using saline spray.
I had a upcoming appointment with my Urologist the next week because my yearly PSA test showed it had doubled to 5.09. Doc gave me a DRE and said I had some enlargement but didn’t seem to have a problem. He gave me prescription for Bactrim for 30 days. Possibly the last BCG maintenance or just the frequent catheter was the culprit. That dropped my PSA to normal levels.
I rationalized that since I was taking the antibiotic for such a long period that I would wait and see if my nasal congestion cleared up – it didn’t. My R eye looked like it was kind of bulging. So the last week I made a appointment with ENT physician. He said it looked like I had a large polyp blocking any airflow, took a biopsy and I would need a image guided CT scan to examine and prepare for surgery. Got that. Path came back ***surprise – B cell non-hodgkin’s lymphoma***. I’m having R-CHOP Chemo and all that entails. I had my first treatment today (6 hrs).
My Oncologist said he would be hesitant for me to have my scheduled BCG in Feb. while on the chemo because my immune system would be very weak and susceptible to infection.
I haven’t contacted my Urologist yet but was wondering if anyone had a similar situation as far as delaying the BCG maintenance. Also my PET scan show “Circumferential wall thickening of incompletely distended urinary bladder without focal lesions.” ?? Significant???
Peace and Love,
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 BCG7 Replies-
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
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.
WOW ! That is great news.
some part of your drug cocktail is amazing.
Best
Jack
6/2015 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
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
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
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.
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
Dave,
Sorry to hear of the new development.
The thinking about my chemo & concurrent BCG was a bit different. Not sure if it truly relates, but will offer a question or two to ask the docs.
A year ago, it was BCG maintenance time when cancer was found, at CT, in my kidney (I only have one – the other was lost in an accident). I was told that chemo with only one (cancerous)) kidney would be rough, if at all possible. I elected to go the chemo route – Five 3 week cycles of Cisplatin and Gemzar – AND the three week BCG maintenance at the same time.
Chemo involved a long list of “other” drugs, all intended to combat chemo side effects – constipation, diarrhea, mouth sores, nausea, etc. Additionally there were pre and post chemo IVs to prepare and flush the kidney.
The oncologist disagreed with the urologist’s recommendation to eliminate all steroids. They were explained to be used as part of the drug program to prevent nausea. Steroids were both daily tablets and at each IV. The urologist felt that the immune suppression from the steroids was counter productive to BCG treatments; the oncologist disagreed and suggested not combining BCG with chemo. I chose to do both without the steroids.
It was really a choice between the opinion of the urologist I know and like, and a new, first time oncologist I did not know.
The BCG experience was no different than all the prior BCG treatments.
The kidney cancer no longer shows on scans. Chemo doses had to be reduced a couple of times, and week long breaks were added to get me through. It was worth it all to keep the kidney and avoid the dialysis that would be required if I lost the kidney. The bladder T0 CIS seemed to be gone, but promptly returned. I did not feel that I lost anything by not taking steroids. Maybe it increased the nausea and vomiting, hard to tell.
All that to say, see what your urologist thinks of having BCG and steroids at the same time. Then ask the oncologist what the steroids (prednisolone) adds to the R-CHOP if it is an issue. My immune system took a major hit during chemo, like most people, it is a standard side effect – weekly blood draws watch for it. The best decision I made was to have a port installed to save my veins. Utter fatigue was the worst side effect. Things continue to move in the right direction.
Best to you on the new journey. Hang in there,
Jack
6/2015 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
Tried Keytruda, stopped by side effects
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