Hello... quick history... my dad started treatment for StageIV SCC (tonsil) on September 8th. He gets chemo one day a week and was able to complete 5 weeks of radiation (out of 8). He was doing OK - with normal side effects, especially nausea. THEN last Monday I took him for chemo and the nurse took one look at him and knew there was trouble. He was hospitalized with low WBC count, very bad mouth infections, and a 102 fever. Treatment was suspended.

Finally in the last couple days things were looking better and he was suppose to be released tomorrow (Tues.) Then things took a turn for the worst...

At eleven this morning his radiation resumed... he was doing fine (a little nauseous) until about 5 PM - he could not breathe and was trembling... turns out his heartbeat was extremely high and fever spiked again (102), also his body has swelling. They have him on oxygen and have done another chest x-ray as well as blood cultures.

Has anyone else experienced this or know of someone who has? What scares me, is that the doctors and nurses seem to be at a lose as to why he is having all these problems. (We had other problems prior to this with regards drug reactions). I'm worried he will not be able to make it through the remaining 3 weeks of treatment! He just turned 68 last week and was in great health (besides the cancer dx)before this treatment started. My 28 yr. old boyfriend could not keep up with him on the golf course! He has never been sick and would have thought his good condition prior to treatment would have made it a little easier for him. I guess I was wrong... this can knock anyone regardless. Sorry for rambling... I (we) just do not know what is going wrong. Thanks for listening!

Diana

Hi Diana,
I don't know if this will help you any but I also had some problems towards the end of treatment. I missed a few days of radiation because of nausea. I had problems with hot and cold, constipation, weight loss, dehydration, mouth sores, malnutrician, fatigue, thrush and an infection that required antibiotics (making the thrush 20x worse). I had low WBC, RBC, etc. My heart rate was elevated. My impression was that these were more or less "normal" side effects. I was also in excellent health before treatment started.
My body didn't swell up however, so that one I can't comment on.
This is a highly toxic treatment protocol. Side effects are almost inevitable.

I also never had a temperature higher than 100.5 which was the number that they told me to go to the ER if I ever reached it.

The last 2 or 3 weeks of treatment and several weeks beyond it were the worst part. It gets better after that.

Diana, to some extent,I had similar experience as your dad when I had finished 4 rounds of chemo plus 5 weeks of radiation (concurrent treatment). My WBC count was very low, high fever (over 102), weight loss, dehydration, mouth sore,... many more symptoms you can name. I was admitted to hospital on 10/12/01 for blood transfusion and antibiotic to combat pneumonia. I did not have my radiation suspended since my high fever usually disappeared early in the morning and when the nurse took my temperature, it was Ok for the radiation. So from 1/11/01 to 19/12/01, I had radiation every day except Saturday and Sunday and in the last two weeks, I had it twice a day. A very tough road for me but I managed to go through it. A delay of treatment may not be a bad thing for your dad to take a break but if the treatment is suspended for a long time, it may affect the effect but the team of doctors looking after your dad should know the best. By the way, I did not experience heart problem or short of breath mentioned in the latter half of your post and I don't think it is normal. Everyone is different and I only share my own view which is by no means professional.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Thanks Gary and Karen for your replies. I feel a little bit better knowing he is not the only one having a tougher time with this.

I have mainly been the one taking my father in for treatment and it has been a little discouraging seeing that he looks 10 times worse than the other patients (who are also head and neck patients). Maybe the rest of them are a lucky bunch! (as far as treatment side effects. One of the radiation nurses even told us that Dad is the "worst" case she has seen, as far as nausea goes. I find this hard to believe after reading some people's experiences on this board. (Another great reason for this website!!!)

I just spoke with my mother and she said dad's fever spiked to 102.8 last night. However, his breathing was normal. She does not know yet if radiation will continue today. A resident came into his room this morning and said the heart problem was a reaction to the radiation.

Thanks again!

Diana,
I was never sick once while actually at the hospital or during actual chemo or radiation treatments. I was always sickest at home.

They have worked for years to develop powerful anti-emetic drugs (which have limited effectiveness and only work at about 60% of the time at best). So I don't know what those nurses are talking about. And they should NEVER be telling you sh*t about "..he's the sickest person I have ever seen". I'm at a loss why the nurses are at a loss. Did they just fall off the turnip truck or what?!?! Or are they recent graduates from Western Career College.

And the other "healthy" looking patients - they must be early in treatment... Give 'em time. I looked like a Nazi death camp survivor when I finished treatment but I look fine now.

I don't mean to minimize what your dad is going through. Certainly, shortness of breath, breathing difficulties and fever are serious side effects that must be monitored closely, but are not unusual.

Chest x-rays and bloodwork are SOP.

It is definitely in his favor to be able to complete treatment in a timely manner.

Hi Diana:

First off, let me apologize for my fellow professionals (or lack thereof according to your experience) in the nursing world.Most nurses have no idea the impact their words (positive and negative) have on clients and their families. Next time a nurse or other medical team member tells you "they are at a loss" or "your dad looks worse than I have ever seen", stop the person cold and tell him/her that is an upsetting comment. Sometimes, the routine of working in the radiation department makes it hard for health care workers to remember that every treatment day is a traumatic experience for patients and that's just in the waiting room!

As for the nausea, there is an arsenal of very effective medicines out there that can used alone or in combination given by mouth, patch, or by IV. The same is true for pain medications.

If your dad is being treated in a large cancer center, you can check and see if the radiation department has its own nurse practitioner and/or ask if there is a pain service and/or oncology nurse practitioner who can consult on the case. Often, these nurses are an untapped resources with alot of tricks in their bags that are helpful.

Did your dad have any blood cultures to see if he had any bacteria in his body? This condition is also called sepsis and it is a common effect of chemotherapy.

Kim

Hi Kim,

Thanks for your advice! I will check into whether they have checked for sepsis. They have been doing blood cultures quite frequently. Is that something that they test for routinely?

His latest results came back this morning with the WBC finally almost normal... however now the hemoglobin level is low. The doctor said something about a possible blood transfusion.

He is resuming radiation again today. His team really wants him to complete his treatment (and so do we!). Hopefully there will be no other heart problems. Fingers crossed!

One thing that I found odd, was that before treatment started my father weighed 170 lbs. Then during the past 6 weeks his weight dropped to a steady 157-8 (after PEG tube in place). My mom told me that they weighed him in at *175* yesterday!!! Could that be from all the fluids? We all had a good time making jokes about it, "Wow Dad, have you been sneaking out and hitting the gym again?"

Anyway, I'm off to the hospital now. Thanks everyone for your replies! I share them with Dad and they make him feel better!

Hi Diana

Hang in there - My mom had the worst case of pneumonia some of her nurses ever saw and she is coming out of it - She is now off the respirator and doing well - I hate to say all is good some of the time because we've had so many setbacks (I'm afraid things will turn bad whenever I get too happy) I'm trying to enjoy the good news this time - My mom had two blood transfusions in the past three weeks - Also, she is a bit bloated from all of the fluids - Her face actually looks fuller these days - I'll take it! You and your family have a fight ahead of you but believe it or not you can and will get through it - My thoughts are with you - Let us know how he is doing

Sue

Diana,
low RBC is normal. The radiation zaps the blood cells passing through the carotid during treatment. The red blood cells replace themselves every 120 days so the levels will return to normal eventually. If they get low enough, then sometimes a transfusion is warranted. Transfusions have their own risks. Make sure he really needs one and its not just a marginal issue.

In all fairness to the nursing profession, I doubt would have made it without the fine care I received from my advice and infusion nurses.

It still doesn't sound like he's out of the norm for this kind of treatment. Nobody ever said that radiation and chemotherapy are a walk in the park.

Are you sure they are doing blood cultures? I had many blood chemistry tests but I never had a blood culture test. They can usually infer bacterial loading via elevated WBC levels.

Hi All:

I've been following the thread above about Diana's dad and his elevated counts. I'd like to offer a note of clarification on a couple of points discussed above by Gary.

First off, I would be cautious about directing someone to ask if receiving a transfusion is a "marginal issue". It is really hard to make a call about that without seeing a specific patient's panel of blood results over time. Sometimes, with oncology patients who are in for a long haul, there are expected drops in counts, call nadir points, which occur at predictable intervals. If a downward trend in counts in seen, a transfusion may be recommended prophylactically to rally the counts before they bottom out. In any case, it is appropriate to ask the provider to show you a copy of the trends and interpret the results so you can make an informed choice.

On the issue of the blood cultures, let me offer further clarification. A complete blood count measures predominantly the amount of red blood cells (RBC's) and blood volume (hematocrit) as well as the oxygen carrying capacity of the blood (hemoglobin). It also measures the white blood cell count (wbc) and can detect the presence of bacteria outside of a normal range and on an upward trend which may indicate a local or sytemic infection with an organism which is a bacteria ONLY.

A blood culture, often done when systemic infection is suspected, is a different type of test where the blood taken from the patient is planted on an agar plate to see if organisms grow that are present systemically in the person. It screens for organisms that are bacterial but ALSO picks up those that are protozoal and fungal in nature among others. People who are immunosupressed from chemo often pick up funky organisms that the general public have immunity against if they are healthy.
So,a blood culture is an ADJUNCT to the diagnostic process when a simple CBC may not capture all of the caustive agents that could be responsible for infection.

Gary-my intent is not to offend you in any way. I just think we need to be careful about posting information that is not technically correct because people here often take what is posted as hard fact and I would hate for you or any of us to unintentionally mislead someone undergoing treatment who is making decisions.Being a health care provider myself, I am especially sensitive to making sure the posts that offer medical explanations are accurate.

Thanks for listening,

Kim

Kim,
you DO have an uncanny way of offending me.

I have personally seen people die from blood transfusions, so what I said still stands. All I said (or implied) was question the doctor to make, in your words, an "informed choice". It seemed pretty clear to me. I didn't think I needed to go into "Sometimes, with oncology patients who are in for a long haul, there are expected drops in counts, call nadir points, which occur at predictable intervals. If a downward trend in counts in seen, a transfusion may be recommended prophylactically to rally the counts before they bottom out." which is way over the head of most visitors here.

Although I am impressed with your knowledge (as I am sure you are also) could you explain to me what the semantic difference is between "Make sure he really needs one" and "...you can make an informed choice".

We all know that sometimes doctors will order tests and procedures that MAY be of marginal benefit, hence my statement to question it. It's all about risk/benefit.

And your wonderfully detailed explanation about blood cultures is the same. I said bacterial (NOT viral) and mentioned in MY experience, I never had a blood culture, which are both truths.

About your statement (and obvious implication) "...I am especially sensitive to making sure the posts that offer medical explanations are accurate." would you care to elaborate which part of my experience was not accurate or true? I didn't sign off with "Dr." after all.

Are you the official OCF "medical police" now? Maybe Brian will offer a letter of introduction.

I merely share my medical experience, strength, and hope as do many other patients on this site (although most of the others are able to escape your personal scrutinization).

The underlying tone of my posts has always been either "question the doctors and be be your own advocate" or "your experience is not that much different from mine" -period.

Since I have personally actually BEEN through the treatment I think a little more respect is in order. You are singlehandly the reason why I choose to take breaks from posting here and sadly that IS a truth.

This is a public forum and people come here not looking for medical advice as much as trying to figure out, from a laymans perspective, what is happening to them or their loved one. Or, as in Diana's experience with her dad, what is a "normal" experience (please note the attempt to stay "on topic").

That was the biggest benefit to me personally throughout my cancer journey - knowing what was a "normal" parameter (and I will forever be in debt to Brian and various OCF members for sharing their experience, strength and hope with me, hence de-mystifying the process). The so called medical advice (that I received often) merely served as a springboard to open a dialog with the doctors to have a better understanding of the treatment process, potential complications, areas to be diligent about and making an "informed choice" as it related to me.

Gary (I AM NOT A DOCTOR) A.

Gary:

This post is out of line and I am respectfully asking you to please reconsider the accusatory tone it takes as it is neither beneficial to the mission of the forum nor is it productive in the quest to provide support and accurate factual information to people in crisis.

As you point out, this is a public forum but those of us who post have an obligation to be as precise as possible when providing information that is medical in nature or staying out of the waters of making recommendations without the proper expertise do so. At times, I feel you cross the line when you cut and paste quotes about studies, statistics, and medical regimes without the proper interpretation of the information or the provision of credible sources to back up your statements. As I stated, as a health care provider, I feel I need to speak up sometimes when information needs further clarification and I am sorry if that is hard for you to hear.

We all have something vital to lend to this forum and if it is your personal experience with a treatment that is where, as you stated, the context should remain.On the flip side,none of the folks on this forum are my patients in a professional capacity so you may note I offer general advice but am very cautious about recommending specific courses of actions for people (and I have been asked).

I won't engage in character attacks with any member of this forum because I have respect for all of us who participate and that includes you and everyone who gives of their time and energy to make this forum happen.Additionally, the most salient point you make is that you have lived through the ordeal of cancer and I would never profess to take claim that I know better than you what that feels like everyday. Your bravery and that of all the survivors here is an amazing inspiration. It is unfortunate that in the effort to retaliate you missed that message.

Kim

Sooooooo....Anyone heard any good jokes lately?

Gary and Kim,

As an observer in this exchange, I need to express appreciation for both of you and the passion and commitment you bring to this forum. As someone with a limited experience thus far in my journey, I read all of Gary's posts and respect his opinions and experience. I haven't had to go where he has been and don't want to, but I will have some idea of what to expect if I do.

Thank you Kim for bringing the medical knowledge. You really do clarify things in an easy to understand manner. I know it is tough to bring a different perspective in a discussion or to gently modify what someone else has stated to insure we get a balanced picture.

Sincerely,
Lisa in Ks

*Posted from San Francisco, Cancer Conference. I want everyone to re read the last paragraph of the page which introduces the patient/survivor forum. I know most of you have saved the main forum page as a favorite and you no longer go through that original description of the board, its purpose, and accepted standards of behavior. However, it specifically states that personal attacks are way off base and will not be allowed. The next volley that contains snide remarks, rudeness, or personal attack and that individual

GOD for once I pray we could stay on track and forget politics.

When I read Gary's post and Kims reply I thought "they are not seeing each other's point" WHICH BY THE WAY IS THE SAME POINT! Kim artfully added more detail (but still at that point in agreement)and then ?????????????

what the hell?

SO Anybody heard any good jokes???