August 15, 2017 at 4:46 pm #95365
I’m sorry to hear this. Perhaps it would be a good idea for the oncologist to make a dietary referral, or consult with a dietician right away. With a poor appetite and weight loss, it is very possible that your MIL is malnourished which is contributing to the fatigue and edema.
Ask about pancreatic enzyme supplementation, or adding nutritional drinks or protein to the diet. It is best to manage nutrition early in this cancer.
KarenAugust 14, 2017 at 7:47 pm #95364
Her platelets were back down to 70 on Thursday and she was very upset to the point of tears when the dr told her no chemo. She really wants the chemo to be more regular and she has missed so many she feels.
She will go back again on Thursday for a platelet check and to see what kind of chemo regimen they can establish.
My husband and I were able to take her out for dinner Friday, but she barley eats and gets tired so very easily. She is doing better with the pain, but I could tell she was having some while we were out.
These sytmoms worry me. She has lost so much weight, and she has edema in her legs and feet. We just tell her to rest often and take it easy in hopes of her saving energy to fight this wretched cancer.August 14, 2017 at 4:17 pm #95363
Thank you so much for updating us! I’m sorry it took me so long to respond, I’ve been away for a family wedding in the Midwest.
I’m glad to see that your MIL’s platelets rebounded a bit, and that the oncologist is taking a pro-active approach to monitoring her counts. Thank goodness as well that her pain is more manageable now! Whew!
Keeping you all in my thoughts,
KarenAugust 8, 2017 at 9:40 am #95362middlesister1Moderator
Thank you for the update- keeping fingers crossed for chemo and keeping pain in control.
CatherineAugust 7, 2017 at 1:20 pm #95361
So sorry it took me so long to respond. We have been overwhelmingly busy lately!
My MIL was able to have her small dose of chemo on Thursday and she was very glad she could. Her platelets were at 83. Her oncologist wanted them to be in the 100s, but let her have her small dose of chemo. Her dr wants to see her weekly for platelet testing now.
Her oncologist also told her to take her morphine more often and her breakthrough meds less often and she seems to be feeling less pain now. She can still “feel” the pain but it’s tolerable.
She is supposed to get eloxatin (oxaliplatin) and Gemzar (gemcitabine for her large dose and then just one of those (not sure which one) for her small dose the next week. Hope that her platelets stay up and she can keep up her chemo schedule because she says she feels better while getting it.
HopeseekerAugust 3, 2017 at 8:39 pm #95360
Wonderful! I am so glad that you found the information helpful! I’ll keep an eye out for your posting after you MIL’s appointment .
-KarenAugust 3, 2017 at 1:02 pm #95359
THANK you so very much for the info and links. I read them and feel much more informed and will pass this info on to my husband and MIL. I hope that my husband will be able to speak to the onc soon about meds and possible chemo change or other options if she can’t handle this chemo type any longer.
Today is supposed to be another chemo day for my MIL if her platelets have rebounded on their own. I’ll post about the results of her visit as soon as I hear from her later today. I
t’s been 4 months since diagnosis and she has done very well up until this last few weeks which has me worried some because I know how fast growing and chemo resistant this cancer can be. I also know the drs prognosis isn’t always correct so the 3-6 without chemo and 6-9 with, are just guesses and no one really knows how well a person can fight and even beat something like this!! I’ve seen many on here that have lived YEARS past their predicted time frame.
Thank you all again for all the information, support and care you show! I am a researcher by nature and have a need to know why, what and when we can get things done or changed or keep going with what’s working. This site has been a huge help in that!August 2, 2017 at 8:17 pm #95358
In my experience, there are many reasons why pain may not be controlled including patients avoiding taking their breakthrough medications due to unpleasant side effects. (I see you mentioned this may be the case). This is where open lines of communication between patient/family and provider is key. It is sometimes hard to talk about pain issues, but this is such an important topic!
Pain management in cancer is very dynamic. If one regimen does not work, then another must be attempted. Opioid rotation, or switching from one opioid to another may be necessary, as well as adjustments in dosage.
I frequently see Fentanyl patches used to manage pain, along with an oral opioid for breakthrough pain. I also see exactly what your MIL is receiving, a long acting opioid and a short acting for breakthrough. If her current prescribed medications are not dropping her pain below a 5/10 on a 0-10 scale (and she is taking them as prescribed) then it is time for medication adjustment.
One important teaching topic which I discuss with patients and families very often, is to understand that there may still be pain, but to decide on what pain level is <i>tolerable.</i> What I mean by tolerable, is the pain level that the patient is comfortable at, where they are able to function well without being sedated. For some people this is 1/10, and others it is higher. It is good to try to understand how the individual feels about their pain, and what their expectations are as far as management.
As a nurse, I am generally concerned if a patient has pain upwards of 4-5 as they may escalate rapidly, so I generally medicate accordingly before the pain is out of control. It is much more difficult to decrease pain if it has gotten to an 8,9,10/10 then if at a 4 or 5/10.
Regarding concerns about a low platelet count or thrombocytopenia, 45 is low, but I see physicians often wait to transfuse until 15-10,000 (10) or less. (Due to chemotherapy). Of course, always watch for signs or symptoms of bleeding, i.e., a nose bleed that does not stop, bleeding from the gums after brushing the teeth, blood in the urine or stool, a cut that will not stop bleeding, excessive bruising, petechiae, or a sudden and severe headache. If a fall occurs and the patient with a low platelet count bumps their head, bring them to the ER as they should get a CT of the head done.
Platelet count will rebound between chemotherapy infusions as well as RBCs, hemoglobin/hematocrit. Sometimes it may take longer though due to many factors.
Here is some info on thrombocytopenia (low platelets)
Another issue with platelets (and blood for that matter), is that there is a nationwide shortage of blood products. Blood banks and physicians are very judicious in their use of blood and blood products, and transfusions do not come without risk as well. Benefit versus harm must always be taken into consideration.
I hope this information helps you! I know it is a lot!
This information is not meant to be taken as medical advice and is purely my opinion. Please always consult with your physician if you have questions or concerns.
August 2, 2017 at 5:24 pm #95357
- This reply was modified 3 years, 9 months ago by karend.
Thank you very much for your input. I agree that there is no reason my MIL should be in pain with all the options there are now. I think part of the issue is that she does not like the effects it has on her. She says it sort of knocks he out when it hits her system. She said she gets so sleepy but doesn’t really sleep. I just tell her to take that time to sleep and see if she can get r step up since her body is fighting so hard.
Thank you again for your input.August 2, 2017 at 4:25 pm #95356lainyParticipant
Dear Hopeseeker, just want to tell you what my Teddy was on when things got bad. He was taking 250mg of Morphine 2 times a day with a breakthrough of 150mg every 2 hours. With that large amount he functioned pretty well although everyone is different. It was the only thing that worked for him. Sometimes it is a hunt and peck method to find the right RX and amount.
There is no reason for someone to suffer in todays market of choices. Something new needs to be done in the way of an RX or the pain can get out of hand. Wishing you and your family the best.August 2, 2017 at 12:44 pm #95355
Thank you for your input. The fact that she is in pain even when on 30mg of morphine every 8-12 hours with oxycodone for inbetween concerns me. I always thought drs could prescribe something to dull and take care of the pain.
She goes back on Thursday to see if she can have another chemo treatment. If her platelets are still too low then I think my husband should insist on some alternatives and another scan if her pain does not ease up. Also going to look into palliative care for her. She may fight that though because she is determined to fight and push through this and not let it get the best of her. Maybe if we explain it as pain management and not palliative care she will be more willing. We shall see.August 1, 2017 at 8:20 pm #95354mbachiniModerator
I am hoping her platelets will rebound with the lapse in chemo. I am more concerned that she is experiencing pain and having a hard time controlling it with meds. If there is a palliative care team available at her clinic, I would suggest they be consulted to help with this issue. If pain continues to get worse, I would also push for an earlier scan to find out exactly why the pain is worsening. Hoping for improvement.
MelindaAugust 1, 2017 at 3:47 pm #95353marions wrote:You may also want to inquire about Neulasta, a white blood cell boster.
My MIL said her white blood count was fine. I am not familiar enough with any of this to know how it all works with chemo and lower counts. Can platelets be low and everything else be in the correct range? Will boosting white blood cells also help boost platelets?August 1, 2017 at 3:45 pm #95352Iowagirl wrote:I have had considerable dealings with low platelets because I developed a blood cancer from my bile duct chemo.
It was explained to me that normally, platelets are not transfused until they get down to 15K (in my case). That may or may not be different with low platelets from the Oxiliaplatin. Anyway, the reason for waiting until 15K is that at that point, it starts to become too low. They don’t usually transfuse before 15K because platelets only last about 4-7 days in the body. However, they “can” rebound fairly fast. The only time I got a platelet transfusion was when I had a port put in and my platelets were too low for good clotting….and one time when the platelets dropped below 15K.
I would certainly raise the question of a platelet transfusion though….and also your concerns of not being able to have her do chemo, which was obviously helping. You deserve some answers…and more than she’s just having chemo pain.
Thank you for your input. It makes sense that they would wait to do a transfusion only when counts are that low.
I do feel we need more explanatioun as to the pain she is experiencing. Her oncologist doesn’t want to do another scan until the end of Sept or bringing of October since they did one in a June.July 31, 2017 at 5:15 am #95351
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