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shawna
Posts: 29
Joined: May 2001

As most of you know I lost my grandmother to septic shock on Tuesday. I am trying to deal with this the best way I can but so many questions enter my mind. To those of you who have been through chemo, did your oncologist EVER mention septic shock? The reason I am wondering is because I think every patient should be well informed and my grandmother was on pill form morophine and I believe the doctors should have been more informative since she was not really in the state of mind to do alot of research. I miss her so much and I am not trying to find someone to blame but I think we should have known ALL the risks of treatment. Had she know treatment would or could kill her, she might have opted for radiation and a less agrressive form of chemo. Anyway, I just don't want anyone ever to go through what we just did. If I have to go to Washington for Cancer fighters rights to be upheld I will. If this was a mistake on my grandmother's doctorss part that is one thing. But if doctors around the world are not telling cancer fighters what they are up against that is another. I just need your feedback if you don't mind. I want something good to come out of my grandmothers passing and if I can help one person, that is what she would want. Keep fighting, I will pray for all of you.

jeancmici
Posts: 682
Joined: Feb 2001

Dear Shawna,

I don't have any answers for you but here are some of my comments and thoughts which may/ may not help.

I went to a national cancer institute hospital to have my treatment. The nurse practitioner told me every horrible detail that could happen. Adriamycin could affect the heart - permanently even - cytoxan could cause bladder cancer and leukemia in my future, low white count could lead to infection aand serious trouble. I was told while on AC not to even take tylenol because it could cover up a fever and to regularly take my temp because I could run a fever and not feel ill. I was told to never take a suppository no matter how sore my bottom got and it did get sore! 100.4 was time to call the doctor !

Well, I mentioned this to a former work colleague who was also undergoing cancer treatment at an area Catholic hospital. She repeated these items to her doctor or nurse and got the reply: Oh, at Roswell they WOULD TELL you all that stuff! They mentioned none of this to her - her doctor added in 25 years he never lost a patient because of chemo treatment.

Well, my onco left before my third AC so I switched to another team because the doctor on that team is the head of the dept. and been there since the 80's - also his onco nurse.

Well, no warnings of any kind were given as I finished AC and proceeded to Taxol.

The other day I did too much around the apt. - not much - but for sedentary plus me it was too much now - and got hot and sick feeling so took my temp which was 100.6 and my pulse was racing over its normal 82 at 110. Well, I called - got the nurse (head of dept. is too busy to ever get the phone)who looked at my blood tests the day before - said they were good and mentioned that "Doctor doesn't worry anbout temp until 100.8 or 101.

(Never mind that all the web pages mention 100.4 or 100.5)

Thinking of your grandmother with the infection - the chemo should have been delayed, in my opinion - but doctors like to stay on schedule. You could have insisted but why are we suddenly in these last few years supposed to be our own advocates - we didn't go to medical school.

I did not go back to your original message but think your grandmother was in her 60's. I was told by my surgeon when I mentioned about less aggressive treatment for older people, that I at 63 was not older in chemo treatment - 80's was considered older patients or late 70's.

I think I would schedule a time to talk to her doctors who made the decision to go ahead with the chemo that day and ask him/her all the questions you want to. You will have a better understanding of the situation, be able to get answers from the only people who knew why they made the usual or stupid decision - whichever it was- and will make you feel better having had the opportunity to get all this off your chest.

One of my high school classmates married a doctor, had a father who was a doctor and still alive at the time, and her brother is a doctor also - yet she died of breast cancer at age 60. Even with relatives on an inside track some people do die sooner than expected. I doubt that she didn't get the best available treatment - at least one would think so!

Sorry for such a long message - I do not know how to say things in a few words.

Thinking of you and sending caring thoughts-
Jean

shawna
Posts: 29
Joined: May 2001

Jean,

My grandmother was a very young 69 years old. She had had thyroid cancer at 25, lung and breast cancer at 55 and now lung cancer again. All she wanted was a little more time. Chemo actually lessened her time and that makes me very angry. In the hospital, she had pneumonia about april 23rd and they diagnosed the lung cancer that we already felt quite sure she had. One doctor, her pulmonary specialist, said that it was operable and it needed to be operated on because of the pneumonia. He did not think she would get rid of it. The "jerk" thorasic surgeon said he would not operate because the lung tumor had wrapped around her spine, however the neurosurgeon said he would operate. The the oncologist said we had to get started with radiation to shrink it and in three weeks he would start chemo so it would not spread. He NEVER said of any risks, gave her any options like radiation with no chemo or vice versa and instead of starting chemo in three weeks, started it the following week. I felt helpless sitting there with 5 different doctors who finally all agreed on the plan of treatment and me being 27 years old with a degree in criminal justice(that really helped), trying to help my grandmother who was my ROCK, make a decision like this. I feel like I have been assaulted. Not only did the doctors not really want to answer my questions, which I always had written down, they acted like I was stupid for questioning thier authority. Then in the hospital, as my grandmother lay there on a respirator, the pulmonary doctor had the nerve to say, "she wasn't going to beat the cancer anyway". So I guess he thought that it was okay to let her go now because the cancer wasn't curable. Well my other grandmother with lymphosarcoma wasn't curable either but went into remission and never came out.Anyway, sorry to jabber, just need someone to talk to. Thanks for your input and I hope you let me know what you think. Oh yea, when we finally convinced the doctors we needed to bring her in, they had her on the wrong floor for 2 hours, struggling for a breath and getting the wrong care. It all happened so fast. Chemo saved my other grandmother and then a stupid doctor killed her and I just can't live through it again. If they did not inform us correctly and if other doctors are not either, I have to do something about it. I have a bit of my grandmother's fighting spirit in me and will not let this go unchecked. Hang in there honey, you can beat cancer. My sweet grandmother did three other times. God bless you and I will think of you.

Hugs to all!!!

Shawna

slynne
Posts: 31
Joined: Apr 2001

Shawna I am so sorry about your loss. I have read your posts and my heart goes out to you.
You mentioned we have to be our own patient advocates and how true that is. When I was given AC I was told it would make me nausous and tired and to call if my temp got to 100. My thred AC treatment put me in the ER - I got very sick, dehydarated and almost hysterical. When I saw my Dr. following my ER visit she said I had an allergic reaction to it and they won't give me a 4th cause it could kill me. This was a surprise to me cause I didn't know ANY of them could do that. When they started me on TAxol I was told it would be a walk in the park compared to the AC. Was told to take tylenols IF i needed them. The body pain I experienced 3 days later was excruciating. She never told me this could happen so I was terrified. We had a meeting with her following this treatment and she knew we were upset. When I asked why she didn't tell me she said 'not everyone gets it'. Well by that time I had found this board and had a whole paper filled with questions. She has looked at me differently ever since then. I'm not uninformed anymore and she knows it.
Again, my deepest condolences for the loss of your grandmother.
Susan

shawna
Posts: 29
Joined: May 2001

Thank you so much for replying. That is exactly my point. Why are cancer patients not warned about these risks before they become a major problem. My nurse practicioner told me all the risks of my birth control shot, so why in the world would oncologists not let you know. You obviously go to them to sustain or atleast have a better quality of life and a longer one. I feel everyone should be educated enough to make a decision based on fact not on fear. Sure when the smiling oncologist came in and said we needed to start the radiation and chemo to prevent the cancer from spreading it sounded good. But if he had said it could kill you in less than a month, she might have opted for radiation and no chemo. I am not blaming them for her death but I am going to find a way to give time/money, whatever I can to ensure that patients are informed of the risks and what to look for. Now I have learned that signs of septic shock are confusion, fatigue, itching or a rash and fever. She had all of those and we called the doctor and they called in Keflex, an antibiotic that I take for tonsilitis, instead of letting us bring her in. I also know now that sepsis is more treatable the earlier it is diagnosed. So while we sat here watching her suffer, thinking it was just the chemo making her tired and sick, we could have had her in the hospital on antibiotics and getting help. Did you feel uninformed and mislead? I don't know what to think. I just know that we wouldn't have waited until she fell into the floor to call 911. That is my memory right now and the horror of seeing her on that respirator. Please tell any of your friends on chemo to look at the signs of this and other deadly side effects of chemo. Again, chemo saved my other grandmother whom I would never have even met without her recieving treatment. I do not think it is a bad thing I just know that I should have known what to look for. Thank you again for your response and keep in touch. You all have been wonderful to me and if I can ever help anyone, I am here.

Hugs to all,

Shawna

jeancmici
Posts: 682
Joined: Feb 2001

>>>>She had all of those and we called the doctor and they called in Keflex, an antibiotic that I take for tonsilitis, instead of letting us bring her in. I also know now that sepsis is more treatable the earlier it is diagnosed.(My note - and needs intravenous intervention quickly)

>>>>instead of letting us bring her in.

Those few words above caught my eye. Even if you usually need permission from your HMO to go to the emergency room or see a doctor, in what YOUconsider an emergency, you should go to the hospital without permission and insist on treatment.

Keep this in mind for future sickness in your family. A friend took her elderly father - in his 80's - to the emergency room two or three times with severe pain in his back and legs - he was given pain meds and sent home. She called me before the third time to ask what she should do. I had already had a few years of the medical establishment and my mother so I advised her to request them to admit him or she would leave him there and they would have to admit him. They then admitted him and ran tests per her request and found he had metastatic prostate cancer which was already far advanced in the bones.

It's a shame how we must push sometimes - keep a low voice and BE FIRM. I've been there- each time I've been sick I've learned better how to take care of myself.

Sending hugs and love to you and your family,
Jean

shawna
Posts: 29
Joined: May 2001

We took her to the ER three different times since April 23rd and she died on June 5th. The problem is that we first have to take her to the rinky dink hospital we have here and they have to asses the situation and get permission for Fort Worth to send her by ambulance. When her doctor is not on call, which has always been the case, we got some doctor who did not know what the hell was going on, had never met my grandmother and didn't really rush things along to get her up there. And the night she fell into the floor, she had the fever and thrush and all that but was fine at 6:30p.m and was literally unconcious at 9:00pm. What my mother was doing by calling was to get her an appointment with her actual doctor who we assumed knew her case, during normal hours, the see if there was a problem. By the time we had any indication she was in bad shape, it was apparently too late. Insurance was not even an issue to us. Her doctor is far away and like I said the hospital where we live CAREFLIGHTS everyone who doesn't have a broken leg, to Fort Worth. They were going to take her by helicoptor but did not think she was stable enough. I just always believed that your doctor was suppose to care for you. Not every other doctor in the city. And her doctor seemed very unconcerned about the symptoms, therefore, since we trusted him, we did what he told us to do. Maybe that is where we went wrong. I don't really know any more. I just think it is pitiful. Thanks,

Shawna

nancys
Posts: 336
Joined: Aug 2000

Hi Shawna, When we lose someone we love, we always question if we did all we could for that person. I felt that way about a precious brother that I lost just this last January to a brain tumor. Like you, I now know more about treatment for brain tumors than I knew in January. I am lucky to have a wonderful Oncologist. Did he warn me of all the side effects of Chemo, NO. His thought is to treat the symptom as it appears and not give the patient preconceived ideas, because he feels that thoughts do influence action. I feel the place where your grandmother's doctor fell down was in treating the symptom as soon as it appeared. That was taken much too lightly by his medical staff. A fever without infection is a serious situation and should be dealt with right away. Writing a letter to the doctor may help you rid yourself of some of this hurt and it would make him remember to treat these symptoms more seriously in future patients. Doctors in all feilds have so many patients now that they do not connect in a personal way with many of their patients, as did the physicians of days gone by. You were blessed with a close relationship with your grandmother and I hope your heart heals soon. Love to you, Nancy

bdean
Posts: 262
Joined: Feb 2001

Dear Shawna:
I have not yet read what the other ladies have responded to you, because your question hit home with me. That is, I do not think any of the oncologists that I know of dare tell their patients all the really bad side effects that MIGHT happen--simply because these things probably will not happen; and if the patients know the worse, then they will be too afraid to go through chemo--which might save their lives and give them many more years. I do not know the anwers, I think they (answers) should be available if a patient really wants to know. I called the American Cancer Society to see if they could send me something with the worse case scenario on the Taxatere; but all I got was the generalized warnings. Like, when I changed to the Taxol; the literature said mild bone pain. I sure would like to see whoever wrote that have just 10 minutes of the bone pain I suffered--there was nothing mild about it. Patients rights seem to exist only if you are aggressive and demand answers; and most of us are too befuddled or too scared to know what to ask for and just blindly go along with the doctor. I will be interested in learning what you find out; and if I can help you in any way I will be glad to do so. I only knew about what happened to your Grandmother because it happened to a friend many years ago. You can e-mail me at my home address;
bandgdean@peoplepc.com

Good luck and God bless. I am with you in your quest.
Love and hugs from Brenda from GA.

shawna
Posts: 29
Joined: May 2001

I agree with the fear cancer patients might have if told what could, but probably won't happen. However, my grandmother was a smart woman, a fighter and had a good head on her shoulders and to her, the cancer was the enemy not the chemo. I KNOW she would have taken it anyway, knowing the risks. My deal is, she needed to know the risks. We asked what side effects she might have and the oncologist said "probably none". Possibly nausia but he doubted it because that gave her some IV nausia med before chemo. He said her hair would not fall out but might thin a bit. SO our impression was that this must be a mild form of chemo because my other grandmothers chemo and radiation made her hair fall out and it didn't even come back. (neither did her cancer). Anyway we got a booklet from the radiologist that said all the horrible things that radiation could cause. Heart damage, not being able to swallow, severe burning of the skin, etc. And she said go for it. I don't even expect a doctor to sit down and go through every horrible detail, however, it would have been nice to know the signs to look for that something was wrong. She had splotches that itched several days before she died, we called the MD, they did not think it was a problem. That happens to be a sign of sepsis I have now discovered. She had a fever and could not talk as well as horrible thrush and could not eat and barely drink. We called, they sent a prescription of Keflex. My point being is that if they don't tell you about sepsis for example, shouldn't they know when you call with symptoms that something might be wrong? Not only that but they went ahead and gave her the chemo treatment with fever, thrush and larengitis, oh and also a really bad cough. I just think it is sad that you yourself need a medical degree to really take care of the ones you love. And I feel I let her down. I was trying to get all the information for her about cancer off the internet and failed to get the right info to warn her of this. The whole time she was sick, I kept telling my mother that it was probably just the chemo making her tired. I blame myself as much as any doctor or hospital. Me and my little sister drove her every day to Fort Worth for radiation and we asked questions and thought we were doing a good job. Guess not. I wish she had needed something they could have taken out of me, a kidney or something. I would have given my arms and legs. She was that important to me.I pray to god that this never happens to anyone else because it seems to be preventable, to some extent. Thank you for everything all of you. I know you don't like negative talk on this site and I don't blame you. I will try to stay away but you all have been such support for me. And if even one person who reads any of this sees symptoms of sepsis and makes it to the doc on time, that is all I want. Hugs to you all.

Shawna

bdean
Posts: 262
Joined: Feb 2001

Dear Shawna:
I'm sorry, I did not make myself clear. I agree with you 100%. I said that about the doctors, because that is their excuse for not telling their patience--I was NOT excusing this practice. I truly believe we are entitled to know even the slightest possible life threatening problem. I know my ocon. nurse really stressed the fever thing. I for one believe in hearing negative and positive thoughts--especially when it comes to our own well being. Cancer is tough enough to fight, but we need health care professionals that listen and not assume; but err on the side of caution rather than the opposite. That is why I said if I could help you come up with any kind of plan for patient's rights--that is to be informed and warned. I searched the internet--from American Cancer Society through all their links; and could not find anything on the serious side effects except a glossed over statement. My nurse finally gave me a site to go to and now I don't remember because it was last year--when I started having so many different problems just from the chemo. A friend now has type 2 diabetes from chemo; another friend has fluid filling her lungs from the Xeloda--she has had them drained twice!!!--and is now off this drug. The patient's doctor should at least give a general warning--like this is your only hope; but this drug can do this or that. Like stem cell therapy - they give you a lethal dose of chemo & then replace burned out bone marrow with new stems--it might prolong your life or the toxic effect of this could destroy your liver. One has a hard choice to make if desparate.
Please do not blame yourself; you did more than most patients do to inform yourself for your grandmother to ensure she got the best treatment. You are only human and not a scientist or medical person--you cannot read minds--so please give yourself a break and remember that your grandmother knows what you did for her and would never want you to blame yourself in the least. I am sure she was so thankful to have such a devoted granddaughter--that love and respect and devotion were equally shared. You can't change the past--so live as she would want you to live--that is the best way you can honor her memory; and I think she will be smiling down on you from now on.
May God bless you always,
Hugs from Brenda

shawna
Posts: 29
Joined: May 2001

And I did not mean to make it sound like you felt any different. I just wanted to point out the "issues" I had about my grandmothers care. I know she is in a better place, I am glad she did not suffer any longer than she did but that doesn't take away the fact that she wanted to live, we wanted her to be here and from the day she was diagnosed to the day she dies was only 42 days. We did not have time to prepare anything. She and my mother were going to buy cemetary plots, go through important papers, do a power of attorney and I was going to let my daughter spend time with her.(My grandmother kept her everyday for me while I worked for the first 4 years of my child's life), and my daughter loved her like an extra mother also. I was afraid, however, that since my child went to daycare that I should not have her around my grandmother during chemo because of the dreaded "daycare germs". So I just feel that by not informing us of the risks, the doctors did not give us a feeling of urgency that we might should have felt, to get things in order. That is my problem. I am moving on, trying to think of ways to inform and help other people prevent this from happening. I thought about seeing if this board would allow us to have a special forum for everyone to give thier advice on chemo/radiation etc. We could tell the stories that we know of and perhaps, save someone from becoming a victim. I have other ideas, but that might be a start. The breast cancer part of this site is great but some of the other discussions are rarely responded to and people with other cancers might not think to come over here like I did. My grandmother survived breast cancer, so it has always been close to my heart, but this time she had lung. So had I not followed Tiger here from the Metastatic forum, I would never have had the pleasure to meet all of you. Maybe more people would enter a discussion about treatment and we could reach more people. What do you think?

See ya,
Hugs!
Shawna

shawna
Posts: 29
Joined: May 2001

And I did not mean to make it sound like you felt any different. I just wanted to point out the "issues" I had about my grandmothers care. I know she is in a better place, I am glad she did not suffer any longer than she did but that doesn't take away the fact that she wanted to live, we wanted her to be here and from the day she was diagnosed to the day she dies was only 42 days. We did not have time to prepare anything. She and my mother were going to buy cemetary plots, go through important papers, do a power of attorney and I was going to let my daughter spend time with her.(My grandmother kept her everyday for me while I worked for the first 4 years of my child's life), and my daughter loved her like an extra mother also. I was afraid, however, that since my child went to daycare that I should not have her around my grandmother during chemo because of the dreaded "daycare germs". So I just feel that by not informing us of the risks, the doctors did not give us a feeling of urgency that we might should have felt, to get things in order. That is my problem. I am moving on, trying to think of ways to inform and help other people prevent this from happening. I thought about seeing if this board would allow us to have a special forum for everyone to give thier advice on chemo/radiation etc. We could tell the stories that we know of and perhaps, save someone from becoming a victim. I have other ideas, but that might be a start. The breast cancer part of this site is great but some of the other discussions are rarely responded to and people with other cancers might not think to come over here like I did. My grandmother survived breast cancer, so it has always been close to my heart, but this time she had lung. So had I not followed Tiger here from the Metastatic forum, I would never have had the pleasure to meet all of you. Maybe more people would enter a discussion about treatment and we could reach more people. What do you think?

See ya,
Hugs!
Shawna

bdean
Posts: 262
Joined: Feb 2001

Dear Shawna;
You may have something there. I must admit I do not take the time to look at the other sites. I feel bad because I got an e-mail from a young man about metastasized cancer that he has and is surviving; and he had read my gallery contribution and wanted to assure me that it was not an immediate death sentence. I meant to go to that site and thank him, but I had forgotten (chemo affects the memory--at least that is the excuse I am using!). Keep me informed. As I told you before, I can deeply sympathsize because of my relationship with my dear 'Granny' as she wanted every one to call her. She died suddenly without warning - just 2 months before my son was born. He was the only thing that kept me from missing her so deeply. She was only 69 years old, too. You are in my prayers.
Hugs, Brenda

shawna
Posts: 29
Joined: May 2001

I still want to be encouraging because my grandmother was a survivor. Most Dr's and nurses we dealt with had never met anyone who had survived three primary cancers over a 44 year span. And I am still not convinced that she could not have beat this one. She did not die from cancer. She died because of a side effect of treatment. It is a hard call to make but I will remain an advocate of chemotherapy and radiation. Had we been informed about what to look for, I believe she would have lived had we got her to the hospital a few days sooner. She lived almost 5 days after they said she would go any second. They were amazed by her and I will always be. She was my fighter. My other grandmother did it too, beat rare, incurable cancer. So I want to help everyone who is going through this. Give them hope when the doctors are grim about thier prognosis. They do not know everything. I have REALLY been able to establish that in last few weeks. I will see what I can do about the message board thing. I do think it would be benificial. Hugs to you.

Shawna

24242
Posts: 1417
Joined: Mar 2001

Shawna,
We all understand how you must be feeling. It was made quite clear to me that the state my body would be in would be dangerous and a threat to my life. I got raging staph infection and it almost killed me. Morphine has its own side affects as well. I knew the chances of side affects just didn't know I would hit 1% ranges. Everyone is different. With young cancer patients it must be treated very aggressively don't know about grandmothers.
Keep talking, your right people should know.
Make a difference to others,
24242Tara

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