Update on Joy from her sister

Hi everyone, this is Joy's sister Jennifer. Last week she started Ixempra and Herc., she also had Zometa. Her Dr. switched her to this from H+Tykerb because she was experiencing increased liver pain and her numbers were starting to climb. Since the Ixempra she has been in horrible lower abdominal pain. We know she is very constipated but nothing seems to be working to relieve that. She is very worried that the cancer has spread to someplace other than her liver and she feels like she is losing her battle. She so scared, she doesn't want to talk to her Dr. because she's afraid she will say this is the end of the road. I have always been at her side giving her support and hope. But I must say I am very worried for her at this point. I have researched just about every clinical trial out there, there is not much in Colorado, but I think right now she is too weak to go anywhere else. So my question to all of you wonderful people is, do you think this is the right treatment? Is it the Ixempra making causing the symptoms or a spread of the cancer? Any input or thought would be greatly appreciated. I read all of your posts everyday and would greatly value your opinions. Thank you so much, Jennifer

[Mary Anne in TX]

Jennifer, I'm so sorry to hear that Joy isn't doing well on the new treatment. I do understand her fear, but would encourage her to talk to her doctor and ask to perhaps see one other person close by that could give her new insight and hope.
I don't have experience with Ixempra, but I know others will give you feedback and suggestions.
Joy is a great person and I send her my prayers and best wishes for some relief from her discomfort.
ma

[WomanofSteel]

The constipation can also be causing her pain. If she is backed up that badly the doctor should be giving her something by prescription. If that still doesn't work she may have a blockage and need surgery. Tell her to not give up. She needs to investigate things further. Wouldn't she feel silly if she died from a piece of poop instead of this stupid cancer? At least find out what it is. You can't fight the unknown. God bless you both and good luck to her.

[sally]

Hi Jennifer, Is Joy due for any scans? I don't know anything about Ixempra. I'm sure you will get responses from those who do. Joy is such an inspiration to me. Don't let her give up and definitely tell her doctor everything. I had severe lower abdominal pain and my PET/CT said I was clear. The pain got worse so I had a CT with the 2 hour drink and contrast and it showed a large mass smooshed between my intestines. It was very thin so almost undetectable but about as big as the average size hand. It was very painful and spread quickly. I'm glad I kept complaining and got scanned again. Please let Joy know that we are all thinking of her. Sally

[Believe51]

Hello Jennifer, I want to thank you for keeping us posted about Joy. I am real sorry about how she is feeling right now. Ed is starting his first Ixempra in the morning so I can not give you advice side effect wise. I can however let you know I have researched this drug as best as possible. It is like any other chemo drug, when it works for one it is real good or it just does not do what we need. Working with the issues in front of us we have agreed this is where we start. Still, we will not know if this is the right chemo, only time will answer this for us. Knowing Joy I feel that she has done whatever she must do while looking at what is right for her at the time. There is that word again, time...Ughh! I have faith in her that given her situation and matters at hand her doctor felt this was a great option. Please tell her that Believe asks for to be patient with herself and her choices, magic potions do not work overnight.

As for not wanting to call her doctor, I strongly urge you to ask her to reconsider. Call the doctor Joy, please express yourself and your needs with him. And do not let him tell you what time it is, you will be the timekeeper! I agree with saying that you must address this constipation problem with him since this can become a major complication. Also, we need to know that she is not dehydrated despite what her intake of fluids appears to be. I understand her fears and wish I could erase them but I think that only her oncologist can help her with that. In my opinion, I really think this may be the drug that brings Joy all that she asks it to do.

Jennifer I thank you again and wish that Joy will change her mind about calling the doctor. He will provide her with a prescription to help with the constipation and get past it. In the mean time have her stay hydrated and maybe drink some prune juice or such. Tell her that I know what it feels like to feel like you are losing the battle and ask her if she will walk besides us on ours. Believe51 tells her there is force in numbers. I also send my love and prayers right from my heart. Mention the word 'latte' and see her smile....let her know that toast is for her. And Jennifer, please tell her to baby step this, if it is not the drug, she will move on to other options. Thank you truely.>>Believe51

[Carolyns]

Hi Jennifer,

I am sorry that Joy is not feeling well. It is comforting to know that you are there for her. I have heard that the new chemo she is on is a rough one to handle. So, it would be expected that she would feel bad - from the chemo. It stinks but hopefully it is working and beating back the cancer. You could google the chemo for side effects. As far as he constipation goes, it is unbelievable how much pain that can cause. Please do not under estimate the role this is playing in her discomfort. I had that problem for a while and I thought the worst... turned out to be constipation. I learned that you must try to be preventative in that area.

Once I was really low and had an extremely tough round of chemo. I needed to go in for IV fluids and that helped a great deal. At that time I was also having issues with constipation.

It is really tough to stay positive when you feel so crumby. Please reach out to her doctor and get some relief for the constipation. PS - she should not take suppositories (sp???).

Please give Joy our best and keep us posted.

Love, Hope, Peace, Carolyn

[AlaskaAngel]

Hi Jennifer and Joy,

Joy knows a lot about therapy, but just out of concern I will mention anyway that painkillers commonly are a major cause of constipation, and her increased pain is abrupt enough in onset that it very well could be from the use of the painkillers. Talk with a nurse or doctor who works with patients on painkillers to see what strategies they advise her to use for dealing with constipation in case that is what is happening.

Joy, even the best of the best docs can make a guess about time remaining, but that IS all that it is--a shot in the dark--and those docs openly will admit that. You can wear yourself out just worrying about what they might say or think, so try to stay focused on whatever practical possibilities there are.

Thinking of you,

AlaskaAngel

[ElaineM]

Keep pushing the doctor. If the current doctor does not respond find another doctor in the same area to talk to about the concerns. Don't be afraid to step on a doctor's toes. It is humanly impossible for one human being (including doctors) to know everything about everything. Every doctor has a different box of experience with patients and different interests in his or her field to draw on to help patients. I have never been afraid to step on toes or go find somebody else to talk to about my health concerns when necessary.

[Jackie07]

Found this message from Joy that was posted in April:

Wednesday night prayers coming from me too
It is funny how quickly we can gain a habit. At least this is a healthy one. Every wednesday, once i realize it is wednesday-you know how that is-i hope, I kick it in for all of us.

I have been missing everyone and thinking about so many of you and following your updates.

I would like to share mine as I am very scared and sad. I have been on Tykerb and Herceptin for 6 weeks ish. Both of which I have been on before and had progression, but never had combined the two.
...
_____________

Joy (and sister),

"Cast thy burden upon the Lord and He shall sustain thee..."
In this late Wednesday evening, I am praying for your healing and peace.

[StephN]

Thaks for being such a great sister to Joy. She means a lot to us here as well.

You were not specific on WHICH remedies she has tried, but I am wondering if the Senna tea has been tried. I found this to be good relief for me with other things in bottles were not so helpful.

Then there is Castor Oil.

Please have her at least speak to one of the nurses that she trusts.

[schoolteacher]

Thank you for letting us know about Joy. Please update us about how she is doing.

Tell her I will be praying for her.

Amelia

[Lani]

as cancer cells. You can observe that effect in some patients as peripheral neuropathy in the legs/feet , sometimes in the arm/feet as I understand it.

It may be possible that it may also also cause some damage to sensation from nerves elsewhere including the gut which might "complain" similarly. As various people get neuropathy in the arms and legs to different degrees (or not at all) and recover from it at different rates (ditto), it is possible that this may be transient.

Remember that nontargetted therapies like chemos act on all quickly dividing cells (those which get replaced often vs. only occasionally) and that among those are those that line the gastrointestinal tract. Theoretically her2 is needed to repair damaged cells in the GI tract so maybe being on herceptin makes it take longer for the GI tract to recover. Don't know if that would manifest as constipation, but from my reading it sounds very rare for breast cancer metastases to cause an intestinal obstruction

That is not to say it is impossible for her complaints to be from the cancer, but there are ways to look for that (eg. PET/CT)

Where in Colorado are you? ie, are you near a teaching hospital with cancer center?

Hope some of this helped!

[RhondaH]

while I don't have any new tricks up my sleeve, I'm sure one (or many) of the other brilliant men and women on this site would be happy to help. Please let her know that she is in my thoughts and prayers. Take care and God bless.

Rhonda

[Shobha]

Adding my prayers for Joy. She means a lot to us. Thank you for being such a wonderful sister and taking such good care of her. The pain probably does not have anything to do with cancer. It is important to talk to her doctor and have it clarified. I am sure the news of something less serious will fill her with hope and postive spirit.

hugs,
shobha

[tricia keegan]

I also want to add my best wishes for Joy that she's feeling better soon. A friend of mine has recently had to stop the ixempra due to very low wbc, she just found the side effects too much for her although she was pretty weak from eleven years of chemo off and on.
Thanks for updating us Jennifer and please tell Joy we'll be thinking and praying for her

[caya]

I hope Joy is feeling better soon. She is such a bright spot here- sending prayers from Canada.

all the best
caya

[Sheila]

Jennifer
I was thinking they were going to put Joy back on AC....but that could be my chemo brain....she needs to let the Dr know what is going on ASAP....it could be constpation, it could be something more serious like an obstruction.....some of the chemos can cause severe constipation, so call the Dr. Hoping by now she is feeling better, please keep us updated....she is in my prayers. Joy is such a shinig light on these boards!

[chrisy]

Hi Jennifer,

I'm sorry to hear Joy is feeling so poorly. I feel Joy and I are kindred souls.

I know she has not been feeling too well for a while and has feared what that might mean. I think it has been draining her physically as well as weighing on her spirit. It's hard to feel hopeful under such circumstances.

I agree, try to focus on getting the GI issues resolved. It could be, as Sheila says, caused by a number of things but you need to know so it can be addressed.

One step at a time. Breathe in. Breathe out.

Remind Joy how much I love her.

Chris

Hi everyone, thank you all so much for your kind thoughts and advice. Yesterday morning she was in so much pain, so tired and loopy I went to her house and asked her if I could talk to the Dr. and get an appoinment for her and she said "I'll let you decide." So I called the onc and got her in. They feel it is just severe consitaption, they asked her if she wanted to be hospitalized to take care of it and she of course refused. So they agreed to use a new shot that reverses the effect of the morphine drugs in the colon only. It's pretty amazing science, it turns the receptors in the colon back on. You have to do it at home because you will go to the bathroom in a matter of minutes. So she did that along with some other unmentionables and today she is starting to feel better and sounded like her old self again. So hopefully with less pain she can stay on the Ixempra and hope it will do it's trick. Thanks again for all your help. Jennifer (sorry for the spelling errors typing fast, at work)

[Hopeful]

Jennifer,

I am so glad to hear Joy is feeling better! Thanks for doing right by your sister. You are both in my thoughts.

Hopeful