Bone marrow infiltration - options?

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Today I was told by my oncologist that there is spread into my bone marrow as well as my bones. I am to have 2 units of blood transfused on Thursday and have three options to consider thereafter:-

 

  1. Do nothing

  2. Continue with transfusions as required although they will eventually become ineffective as the body creates antibodies to deal with “foreign” bloods. This option will probably give me 3-5 months survival.  

  3. Consider more chemotherapy (either paclitaxel or eribulin) but at reduced doses to hopefully reverse the infiltration and buy more time (at the cost of side effects and possibility that the chemo itself could damage the remaining bone marrow) 

 

Anyone got advice whether experience-based or not?

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Hello Haxted,

I’m sorry to hear of your latest diagnosis and am sure there will be someone along soon with some much needed support.  In the meantime could I suggest, if you haven’t already tried it, having a look at our Secondary Live Chat service which runs each Tuesday evening between 8.30pm and 9.30pm, the users there have an understanding of what you are going through and are a brilliant support to each other.  The session is run by a nurse, who will help as much as she can, and facilitated by a moderator.  I have put you the link below to have a look at.  It will be good to see you there later if you can. 

breastcancercare.org.uk/community/chat

Take good care of yourself.

Jo, Moderator

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I’m really sorry to read this news Haxted. I would try the chemo if I was in your shoes. But I wish you all the best whatever way you choose to move on from this point. I’m thinking you can stop the chemo if it gets too much. X

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Hello Haxted

I haven’t been offered injections but take a steroid, pernisolone, to keep my blood counts up. This seems to be working for my platelets & white cells.

Since I’ve started paclitaxol in Nov last year I’ve had 4 transfusions - first one was 3 units & the rest 2 units. If the pattern continues I expect to have one more transfusion before the end of chemo. Then I don’t know.

My bone marrow involvement was established via a bone marrow biopsy. Extensive bone mets & symptoms such as tiredness made my oncologist suspicious.

I’m planning to take some time off from treatment except for my Denosumab during April & May. I need to gather some strength following neutropenia sepis, WBRT & chemo. At present I feel unable to make any significant life decisions while I’m so weak from treatment, side effects & the cancer.

Hope this helps. Thinking of you Mildred x

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Thank you for your reply Smartie - it struck a chord! I’ve already had capecitabine which wasn’t too bad once dose was adjusted. I think it maybe an option again. I need to regain some strength before making any decisions.
Mildred x

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Hello
I’ve made it to the end of chemo without the need for a further transfusion which I take as a positive. Scan results & next steps with oncologist on Monday. I know I can’t cope with anymore chemo physically & mentally so I’m not sure what the plan will be. Need some facts first from the doctor.
Hope you are both coping.
Mildred1602

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I find the bone marrow infiltration quite a worry and it is good to hear from others in a similar situation.

 

Mildred, congratulations on making it through the 18 weeks. I do hope you have a positive result at your appointment on Monday.

 

Myfanwy, good to hear that the bone biopsy wasn’t too difficult. I’ve avoided having one so far but assumed it would be very painful. Good to hear that the E&E combination is going well. I was on it for about 3 months and didn’t have too many side effects though looking back I had a very bad chest and cough which may have been connected. The E&E combination appeared to be doing good as a small spot on my liver was no longer visible. However, I became very tired and my blood counts went down and that was when the problem with the bone marrow was detected. I had to have transfusions and was moved onto the Paxlitaxol chemo.

 

I’ve now had 7 of the 18 weekly doses. I’m doing fine though I did have to have blood transfusion on Monday of this week. I was told at the start that this would be likely as they have to try to balance the effect of the chemo with the effect of the cancer on the bone marrow.

 

Like Mildred I am really looking forward to this part of the treatment being over though for me it hasn’t been too difficult so far.  Then what??

 

Best wishes to all

Moonbeam3

 

 

 

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Hello Haxted
Thank you for thinking of me.
My latest scans showed that the taxol had shrunk my tumours but there is still cancer present. I’m particularly worried about my brain & liver. The plan is to closely monitor me with scans in 6 weeks followed by a clinic appt 2 weeks later.
I have struggled since chemo finished with tiredness & nauseous. I have some different anti-nausea tablets which don’t seem to be working so I’m seeing a doctor at my local hospice tomorrow.
All this treatment & side effects is making me inclined to no more treatment as I have no life & I can see the impact on my husband. I suspect in 8 weeks we’ll discus this with the oncologist!
Best wishes to all xx

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Hi Haxted
I’m just reading your post regarding your mets. How did they find out about the bone marrow? Did you have the bone mets before the bone marrow involvement?.
How long ago did you have the breast cancer dx?
How is your treatment going…what did you decide?
Sorry for all the questions!.
Xx