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Keep on keeping on

melbas's picture
Posts: 43
Joined: Jul 2010

Hey y'all. I haven't been able to visit in a couple of days...see we have some new friends. Sorry to meet you, but welcome.This is Melodie, I'm still in the hospital, with no home in sight yet. As of this am, my whites are .667, my platelettes are 17. They have suspended treatment for awhile to try to get these counts up, and also to let these nasty *** mouth sores heal. OOOOUUUCCHHH!!! Did I tell y'all that they hurt? I have yet to get anything liquid...don't even mention solids, in my system. And I have one nurse that thinks I like the pain mediication for the drug effect. Before this, I'd rarely take an aspirin. She will offer the majic mouthwash, the tylenol...anything before she'll break down and give me my pain stuff. And in the 5 weeks of treatment, even tho I''ve mentioned it daily..to every doc and nurse I speak to...no one has examined the original :scene of the crime". I'm going to as them tomorrow, since that is where they found the cancer, now it seems like they are just focusing on side effects. I' still having shooting pains and am very uncomfortable down there, yet they seem to blow by it when mention it. Any suggestions? Melodie

z's picture
Posts: 1411
Joined: May 2009

Hi Melodie,

I am so sorry your having such side effects. You are in the best place to get the wbc up. I know of other posters who have had to stay in the hospital for that very reason. I certainly do remember the mouth sores, and yes they hurt. I really don't understand why the dr will not prescribe pain medication, thats the only way I was able to get through the tx. Is it possible that they don't want your immune system to be anymore suppressed? I really don't know, but there better be a good reason. I hope you get to go home soon, as then, the wbc will be back to where it should be. Please keep us posted. Lori

mp327's picture
Posts: 4148
Joined: Jan 2010

I'm sorry you are having such a rough time, but the hospital is probably the best place for you until your counts go back up. The next time your doc comes to see you, tell him point-blank that you are in serious pain and are not getting adequate pain relief from current meds. No one should have to suffer such pain when meds are available. If he won't do it, then you need to know his reasons. I hope you are feeling better soon and can go home.

Posts: 300
Joined: May 2010

I too am sorry you are in the hospital but agree that it is probably a good place to be to get your counts up and they can monitor you. One of the main points I remember everyone telling me in here is to stay ahead of the pain and I have listened to it, but your doctor has not given you any pain meds? Is that what I read or did I misread that? Before I even started chemo and radiation, my oncologist gave me a prescription for two nausea medicines, ativan and pain meds. She told me if the pain meds do not work, let her know and she will give me something stronger. I agree you should talk to your doctor and tell them you are in a lot of pain. Keep posting in here and let us know how you are doing. Marilyne

pjjenkins's picture
Posts: 173
Joined: Mar 2009

I am sorry you are having a tough time.... wbc down is serious because of potential for infection but I echo those who urge you to clarify with your doc re pain meds. See other posts on that!

Re examining the "scene of the crime", I don't think anyone looked at it until one quick look by my radiation oncologist after 5 weeks because there was a decision about whether to go on. I remember my disappointment when he told me the tumor had not shrunk as much as he had hoped. BUT from everything I have read here, it sounds like the 31-33 doses are now actually standard- I think I had 31. And then they give you a few weeks to heal from the burns before looking again. They know there is a lot of pain. So maybe now they don't do that very painful 5 week peek and just plan to administer the rest of the radiation when your body can take it.

Re mouth sores, my fullest sympathy. They are one of the most searing memories I have also!

Hang in. It will get better! Do they let you see your little one?


Posts: 300
Joined: May 2010

I have not had an internal look by anyone yet but each week when I see my radiologist, she looks to see what damage is done to the skin and monitors that. She asks me questions like do I still feel pressure there or a lump (felt like a lump at one point and now that is gone but is replaced by the burn and pain from that - either way I can't sit straight). No one has actually done an internal and to be honest I'm not sure I want them to right now. Ouch. They did stress all the time NEVER to put anything in there during the treatment - I'm not sure what I would put in there, maybe they worry about suppositories or smoething for the insessant itching. I did not get mouth sores with my first round of chemo and will pray I do not get them for the second round. I would imagine that each round is different and everyone reacts differently. I think it is bad enough to have the sore bottom without having a sore top to boot. Hang in there Melbas, you are nearing the end like me. We can get through this and rally. Keep us posted. Marilyne

Posts: 58
Joined: Mar 2010

My doctors said they would not be doing any "latex glove" exams or scopes during the duration of my treatment protocol. First, they said it would be too painful. Second, they said it would serve no purpose:
- - if the tumor was shrinking, we would keep on going through the rest of the protocol
- - if the tumor wasn't shrinking, we would keep on going with the protocol
So, we just put our heads down and stuck with the protocol. They did examine the outer tissues for radiation damage, and I did have to take a break for 12 days.

Personally, I felt that the anal tumor was shrinking. Before my protocol began, I was taking regular doses of Tylenol and/or Ibuprophen due to the discomfort from the anal tumor. After about 3-4 weeks into treatment, I no longer needed the pain relief. Unfortunately, once Week 5 hit, I once again needed pain pills but it was because of the radiation burns, not from the anal mass.


Posts: 489
Joined: Dec 2009

Morning Melbas!

I can relate to a nurse holding back the pain meds. Like to see her go through it w/o. I seriosuly don't get that. I like you, was not someone who ever took anything....until the C monster came along! Why should someone else decide what we need? If you are in pain, and they aren't helping you, be sure to let your doctor know. Hospitals are fairly competitive, and from what I hear the doctors don't like to hear their patients aren't being taken care of.....so I would let your doc know about this.
I just had a lovely anal exam yesterday..and scope....geez I hate those! Everytime I have got one, I think Geez, could I not have had cancer ANYWHERE else but here!!!!
I only had one every couple of weeks when I was going through treatment....and they are so painful during that time, that was more than enough. They watch it through radiation....and they can see if the tumor is shrinking......so no need to do an exam all the time. I ended up in the hospital with an infection and dehydration, and was never examined.
Well hope you get out of there quickly! I'm not a fan of hospitals. Always feel better at home!!!

Posts: 300
Joined: May 2010

Your comment about they watch it during radiation was interesting. I did not know that until last week as the ct scanner that is attached to the radiation and xray thing that revolves around my body was broken so they had to take an xray. I asked why and he said this is to check the area and size of the tumor. I was afraid to ask if it had shrunk yet. Right now I want it to look like the size of a pea begging for its life but I'm afraid to ask -- maybe I will ask the radiologist if she knows. She has been pretty honest with me so far. I'm just curious to see if all this pain and discomfort at least is reaping some benefit. I find it so curious and interesting how each hospital and staff monitors their patients. It's all over the board, isn't it? Wow.

z's picture
Posts: 1411
Joined: May 2009

Hi Marilyne,

I believe the radiologists makes adjustments as we go through radiation. I know I had cts during the process, so that they may pin point the exact area they want to radiate. Thats why IMRT is a better radiation tx, rather than the blanket radiation they have done in the past, where they radiate everything including healthy tissues. Theres no way Harvey isn't shrinking. If you think about it everything thats being radiated is shrinking and thats why we feel everything passing through us so intensly. Have a nice day. Lori

Posts: 300
Joined: May 2010

Thanks Lori, that makes me feel better. I know I'm feeling the results of the radiation (burning, itching etc.) and it has to be doing something to the tumor too but unless I 'see' Harvey smaller or hear he is smaller I guess I worry he isn't shrinking. But I will continue to picture him getting smaller and smaller until he vanishes into oblivion. Be well, Marilyne

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