iowagirl
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Gavin,
Thank you for the two links. I just finished reading them.
I’ve been home a couple hours now from getting the 2nd blood transfusion today (Sunday). Thank goodness for those angel nurses who work on their Sundays to provide services like this to patients who need hem.
Right now, I am running a very mild, half -degree temp with slight chill, but they said that wasn’t unusual after a blood transfusion. I think the discharge papers said that a temp increase of two degrees is cause for going back to the ER. Otherwise, this morning, my husband said that I seemed, “Perkier.”
I was able to do a little more without breathing hard, but I didn’t know if it was really the transfusion from yesterday helping already, or a sort of placebo effect.My husband must think I’m doing okay, because he just took off for a bicycle ride. Actually I feel good enough to go out myself….but to a store. Will start by walking to the car to see if I get short of breath.
Have had more than my share of pneumonia over the years. In 2013 alone, I think I had pneumonia at least 2 times and then in Jan this year just before being diagnoses with CC. That little grandson of mine, who I babysat 2 days a week, kept catching bugs at day care (where he was the other 3 days) and infecting me. Sigh. Yes….it was GOOD to hear that there was no pneumonia or anything they could see on an x-ray.
As for the platelets, I believe that my local oncologist will hold off on any chemo next Wednesday, August 13th, due to the numbers being lower than acceptable for chemo. It’s possible that they may rise up to the required 80 mark by then, but if my platelets had been at 80 at the start of this last chemo, I would have been 70 in the hole….as the platelet drop this round has been over 150. Yikes. The on-call oncologist did not want to do a platelet transfusion at this time. Actually, my husband and I have discussed the situation. At the very least, we are going to not do chemo next Wednesday and give my body a rest to see if the numbers (esp the kidney function ones) will rebound to something less scary. We may even opt out for 2 weeks…or at least wait to see what the counts are. At this point, while I hate to feel like I’ve been defeated by not doing the last round, the oncologist reminded me that I have 5 in the bag, and there is nothing magical about the number 6. I know that I, and others, feel that we have to be “perfect” and by not doing that last round, we’re giving less than our best and a failure…wimping out. That’s how I was brought up. Believe me…..I push myself farther than most people do….I’m the first to jump off the high diving board…..terrified, but first. This is a “head game” for me at this point, …to weight the risks and benefits. Right now, the question has to be how much good that last round of chemo would actually be compared to the permanent damage it might do. (kidney numbers). I think my local oncologist has my best interests at heart…..and she may be the one who makes the final decision, though she has as of yet, left the ball in my court. I hate it when there isn’t a clear cut decision. But when there isn’t, we have to decide based on all the facts and risks and then gamble that we’ve done the right thing. Sometimes, we get lucky……in that the end result is good and the same no matter which way we choose. If this chemo was clear cut….that we KNEW it killed off CC cancer cells, it would be a no-brainer. Unfortunately, the jury is still out on that one.
Well, I see I’ve again used the forum to think things through…..for me, this does help. Alas, this time, I have to say that I still don’t have an answer. For now….I just want the red blood cell transfusions to make me feel better and then see where we go from here.
Julie T
Gavin…..thanks for sharing that. Impressive, indeed. I want one right now!!!!
Two years to to trials seems so long, but if he can get this to work……..It just wouldn’t be the early treatment of a cancer….but I think it would be a bit more peace of mind for some of us patients who dwell on the what ifs. While the nanodevice would hopefully detect any cancer in a very, very early stage…it would also indicate when everything is okay. Being able to know that….would really help the emotional/mental health of patients like I am ….who obsess about the cancer coming back or being back.
Oh my Gosh!!!!!! How absolutely fantastic and incredible news. Thank you for sharing this with us . It’s going to give people hope…..and maybe inspiration to go ahead and try something for treatment even if they’ve been told their time is short…as your dad was. Go give him a big hug from all of us here…..and as Lainy said, “Enjoy life together.”
Hugs from Iowa Girl
Julie T.Round 6 of the Gem/Cis chemo is on hold for now per my Mayo doctor. He was fine with all of my blood counts, except those associated with my kidneys. Both were trending higher, out of normal range. He wants them to be back into the normal range before I would get any more chemo…..in his words, “There’s no point in frying the kidneys.”
So, I go back to the local oncologist on August 13th to get labs drawn to see if I’m okay to do round 6 or not. If the Bun and Creatinine levels are not where they should be, then we will wait a week (can’t remember if he said week or even two if needed) to get kidney numbers back to normal before checking blood levels again. If they don’t settle back into normal, then round 6 isn’t probably going to happen.
Meanwhile, Yes, I’ve been pushing fluids.
The MRI also showed a small hiatal hernia which explains some of the digestive feelings I’ve had. Must eat and drink smaller amounts at a time.
As for round 5, which started July 23rd with the Gem/Cis infusion, I’m still dry heaving from that . I’m looking forward to next week….when hopefully, that will settle down and I’ll have some good days again.
I now must find a podiatrist to work on my big toenail that ingrew and became badly infected (my big toe was the color of and looked like a ripe, red plum.). I have a bandage on it and a walking shoe/boot from the ER, which helps. The nurse practitioner put me on an antibiotic and we’re waiting for the results of the culture to make sure the antibiotic will kill the bug in there. We went to the Olmstead Hospital ER ….most all of their doctors and nurses are Mayo educated….and the wait time was almost nothing. We had been told that the ER wait time at St. Mary’s Hospital (part of Mayo) was 5-6 hours. We got fantastic treatment at Olmstead and I gave my CC wristband to my nurse practitioner. He asked some questions….and was super nice.
Daisy…..Fantastically great news. Wishing your mom the best….and many good scans ahead to enjoy life.
Everyone….thank you…it was good to wake up to support this morning when I logged in a few minutes ago. I woke up feeling fine, took a Lorazepam just in case, got in the shower and 5 minutes later was dry heaving for what seemed like 10 minutes, but I”m sure it was just half that time.
My onc gives me Emend in the IVs on the chemo day one when I get the Cisplastin and Gemzar together, She also gives me a steroid as well. This is just hitting me nastier right now,.
It didn’t dawn on me that maybe the next chemo with Cisplatin/Gemzar might have less side effects. How wonderful that would be. However, since round three started, each round has had nausea a little longer and a little harder. That seems to be “my” pattern.
Kris….I will get some GasX today to see if that will help. I”m willing to try just about anything to be able to get through the last infusions and be able to say I did it.
I still feel pretty queasy right now…..it comes and goes……even after dry heaving….which isn’t how it usually goes. I don’t dare take the 2nd Lorazepam as I need to drive today to two appointments….sigh…unless I can sweet talk my hubby into driving me to them.
Gavin, Thank you for reposting that link. I read it again.
Emad, Well, the horse is already out of the barn….since I have only three more infusions left to go….so even if I started on Metformin right after my trip to Mayo this next week, it would only be in my system for one final round….round 6 of the Gemzar/Cisplatin.
I can’t look back now and wonder if the Metformin would have helped. Even the first oncologist who mentioned it to me….who said…and I quote, “ALL diabetics should be on Metformin., ” did not put me on Metformin at the time. So, I’m assuming that there is some reason why not.
Also, if you’re on Metformin, you have to get off of it again for certain tests like scans, so it’s somewhat of an issue. I remember the doctors being very glad I wasn’t on Metformin when I was having diagnostic testing.
One thing I AM doing, is that after reducing my Losartan Potassium BP med to 1/4th during the blood clot episode, we have put it back up to 1/2 now, due to the finding in mouse studies that Losartan Pot allows chemo to get into the cancer cells better. My BP could stand a small reduction…so it worked out fine. But my original amount was too much.
Julie T
Kris…..What wonderful news for you and your family. Dang…here I am with tears falling down my face again, but you KNOW these are happy tears for you all. Best news ever.
Emad, Thank you for reminding me about Metformin and CC. I just mentioned this earlier today to a friend of mine who is diabetic and on Metformin as well as insulin. I am currently only on insulin. However, I had read some research that indicated that diabetes may be a risk factor for CC….and it “seems” that diabetics who have been taking Metformin were at much less risk of developing CC.
My first local oncologist said I (and all diabetics) should be on Metformin period….(as well as the insulin)…though I don’t think he ever said why. However, I did fire that guy and my current oncologist at home here, said that now wasn’t a good time to start Metformin while taking chemo.
However, I will bring it to the attention of my Mayo oncologist when I meet with him on August 1, just a week from now and again with my GP who would be the one to prescribe and regulate the Metformin for me.
I was not aware of any concerns over previous cardiac problems…..and I know quite a few folks taking it who have cardiac histories. But I will research that as well before I go up to Mayo. I do know that it isn’t advised in elderly patients and had previously brought that up to my GP who informed me that I was FAR from elderly.
I’ll bring up this subject to the onc, Dr. Domingo, and see what he says about being on Metformin and when it might be safe to start that following chemo. It will undoubtedly require fine tuning the insulin I take.
And of course, I will report back anything I find out to the board.
Thanks for the reminder, Emad. I was going to make up a list of things to discuss at Mayo, and I may as well get that list started.
Julie T.
Oh Willow, …dear Sara,…..my tears are falling right there with you. May God be with your sister….you, her husband and son as she goes through her final hours. I’ve been there with my dad when he died of large cell lymphoma and yet, I can’t give one word of advice here right now that seems to make any sense to me. It shouldn’t be happening and yet it is
I guess if I can remember back ….the one thing I did was keep talking to dad , even though the nurses said that the occasional heart beat spikes on the monitor were not really showing life at that point. I didn’t want to leave him until the last of the signs of life were gone. I didn’t want him to be alone even if he didn’t know I was there. I held his hand….stroked his forehead, told him I loved him and that it was okay to go on.
Bless you all…and may God hold in the the cup of his hand and lift you up when you need help.
Julie T.
Kris…I’m going to hazard a guess here that they suggested your dad get the shot because your mom got shingles and it brought up the subject regarding your dad…and of immunization. Since it’s available…and he evidently hadn’t had it yet, they set him up to get the shot so there’s a less chance he might get shingles sometime. The shot isn’t 100%…but does reduce the chances. I got a shot as soon as I turned 60, when it was finally available to me. I’d been hounding my GP to get the shot for several years before then, but it wasn’t approved for anyone under 60. Since then, it has been approved for a younger age, but I don’t know how young.
Shingles isn’t something you catch, if I understand it correctly. You have to get the chicken pox earlier in life….and as such….the CP never really leave your system…it hides in nerve sheaths and later in life, reappear as shingles.
HOWEVER…if you have NOT had a confirmed case of chicken pox earlier in life, you can catch chicken pox from someone with shingles. The virus is the same…and I think until the pustules are scabbed over, the virus in the fluid is contagious and thus can cause chickenpox. That’s the same as if you had chicken pox and non-scabbed pustules infected someone else who hadn’t had chicken pox yet. I think for chicken pox, the pustules are scabbed over in about a week.
Do you know if you had chicken pox already…for sure?
I’d still call and talk to your weekend on call people….because I don’t like taking chances. Cover all of your bases. I wouldn’t want to get chicken pox at any age under any situation if I could avoid it.
Julie T.
Oh Chris…I’m so sorry you had to cancel. I really hated to say that you should ask the oncologist….but it’s better to be safe. I’m surprised that if you’d had the chicken pox that they would be that cautious, but maybe there’s a chance that immunities wear off to some degree as we age and we could end up with another case of it…milder…but still a problem for people in our shoes.
You had shingles while in college? Wow…that’s pretty young….but not unheard of. Usually it’s older people who get shingles. That said, I went to a bridal shower where the bride (age about 30) almost didn’t make her own shower because they had to take her to the ER…..turned out to be shingles You just never know.
Wish we could all get together and converge on you to help you feel better…though I doubt we could take the place of the family you’d planned to see.
Big hugs….Julie T.
