Finally starting chemo, after yet another screw-up!

16 years 4 months ago #9300 by wsilberstein
Replied by wsilberstein on topic Finally starting chemo, after yet another screw-up!
Forgive me for putting in my 2¢ if I'm off base, but I hope the "WE" who figured out that the blood pressure meds might need to be adjusted included the doctor treating your husband's blood pressure and that his blood pressure is being monitored.
BTW, I'm not implying it was the wrong move, but I feel strongly about changing meds without keeping the treating doctor in the loop.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician

Please Log in or Create an account to join the conversation.

16 years 4 months ago #9274 by Stephany

Eileen, tell me more about that pain, please. My husband says his gut is so sore, he's afraid he will never be free of pain. When you said that, I thought...Wow, I've got to get him to read this.

We're on carboplatin and gemzar week one, gemzar week two, and off week three, with six cycles planned, putting us at the second week in February for ending. His blood work looks OK after his first week, so today he had his second week. He's had some real problems with fatigue and dizzyness, but we finally figured out that since he lost weight from the surgery, his blood pressure meds might be a little too strong, so tonight he only took half. Cross your fingers for us!

Stephany in Iowa

Please Log in or Create an account to join the conversation.

16 years 5 months ago #9083 by mikeg
hi stephany - i haven't been totally following your story. however, my husband has been on the cisplatin/gemzar regime for the last 10 weeks. he had cis/gem week one, gem week two, gem week 3, one week off. then repeat that cycle two more times. 9 treatments total. his last one is this monday, oct. 22nd. then the RC nov. 5th.

apparently the chemo relaxes your sphincter muscle above the stomach, so my husband has had stomach pain 24/7 for weeks. it's not so bad during the gemzar weeks. the cisplatin is the ballbuster. anyway, he didn't even lose any hair, believe it or not. his blood numbers are pretty close to normal. he's 58 and other than the cancer was in perfect health. you have to do the chemo for your best survival chances. my hubby has played golf and tennis on the gemzar weeks. he's worked those weeks as well, albeit part-time. stick it out and i hope it works out for you.

eileen g., mike's wife

Michael
Age 58
Stage T2-T3, muscle invasive
Married to Eileen
2 sons, ages 20 and 23

Please Log in or Create an account to join the conversation.

16 years 5 months ago #9082 by Gene Beane
Stephany,
Gotta watch tham every minute, another screw up, hope its all better, how did it all come out? Gene is much better, ganed 6 pounds this week, 158 now, have to get to 180. Lots of milkshakes....take care,, Ginger

Please Log in or Create an account to join the conversation.

16 years 5 months ago #8948 by momof4
Hi Stephany,

Sounds like you were put through the ringer! I hate anal retentive hospital workers...all of that should have been handled long before you ever got there. I am just glad to hear that a hospital actually stopped before a reaction, instead of all the stories we hear about them starting something and then realizing "Oh he was allergic to that", so try and look on the bright side, better an extra night in the hotel & some good Gelato, then having him admitted with a screw-up....

You are now on the Cisplatin/Gemzar super highway. During this process with my husband I have learned to ignore statistics...That is just what they are...You need to remember that the age group that is included in those "STATS" range from about 42-85. That is not even a demographic...There are few things that a 42 yr. old man and an 85 yr. old man or a 45 yr. old woman and a 45 yr. old man will have in common physically besides the cancer. There are too many variables to really do a comparison, and since everyone seems to react completely different to the treatment, you can't even follow those guidelines. My suggestion is to go with the flow, address HIS symptoms as they arrive. Don't be afraid to call the oncologist to tell him whatever you are concened with. Their staff seems to me to be quite willing to help. There is a prescription for almost anything these days, so ask. That is really all you can do at this point wait and see. You have a while before you will no how the chemo is working so just try to get as much sleep (this means caregiver too), and relief from symptoms as possible...if he is nauseous, get a prescription, if he has anxiety, get a prescription, whatever it is...This is temporary, chemo will end, so your only option is to go with the flow...My best to you...It is a long road when you are the caregiver too.

In My Thoughts,
Karen

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

Please Log in or Create an account to join the conversation.

16 years 5 months ago #8947 by Stephany
You all may remember my griping about the problems my husband had with no meds after his surgery, and so you'll commiserate with us now. We came to the hospital a day early, spending the night in a hotel so we could be there early, taking yet another day off work.

We went to the cancer center, checked in, got vitals checked. Got sent to chemo, asked if his allergies would cause a problem, and they told us "no".
Then they gave him a 2 hr hydrating drip. Then we were sent to get his CT scan, where once again we asked if his IVP dye allergy would be a problem. At this point the tech said "you have an allergy?"

Folks, it was the same s***t all over again. After all that prep (about six hours in the hospital, three of something to drink that tasted like rotten eggs, and a drink that was brown and nasty, they said he should have had some pre-meds because of his allergy, and they would not be able to do the CT scan.

OK, I'll skip the next part. Just add in some deleted explitives.

Came back today, where we discussed the three mess-ups with the patient rep, talked to the doc, who said we would still be able to do the chemo. He just wanted a base line and could get it next week.

Then, three hours later, finally back to chemo, for a 2-1/2 hour saline drip, and a long talk with the pharmacist, and finally, the chemo started. He's on carboplatin and Gemzar today, Gemzar next week, and then a week off. Then five more of those.

Any suggestions would be appreciated. I already told them I expected that our insurance company would NOT be billed for yesterday's l-o-n-g visit. And that our doc would talk to the appropriate residents, etc., etc., etc.

The pharmacise said he probably wouldn't have much of a reaction, after the chemo doc said he would.

Oh, well.

At least we found a place with great gelato.

Please let us know if we need to be looking for anything in the next couple of weeks. The doc was pretty pesimistic about his chances of a cure---30% with no chemo, 40% with. And my husband thinks he's going to be in the 70% who get a recurrence. I'm hoping those were just anxiety about the chemo itself. He seems pretty calm right now....snoring away with the drips dripping (in his arms, and from his pouch, since the doc said he should be removing any urine ASAP during the chemo.)

Here's hoping we've done all the scary stuff,

Stephany in Iowa

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne